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Many veterans miss out on valuable benefits available to them when they become disabled due to their military service, or if an illness worsens as a result of their active duty or training.

In this article, I will highlight available benefits even if you are not completely disabled. These benefits may also assist a child, a spouse, or parents.

If you were disabled during inactive duty training, the disability must be due to an injury, heart attack, or stroke. Additionally, your discharge from service cannot be dishonorable in order to qualify for the benefits listed.

Understanding Veteran Disability Compensation

Disability compensation is a tax-free benefit paid to veterans who are at least 10% disabled, with benefits corresponding to the level of disability. You can review the rate chart at www.vba.va.gov/bln/21/rates.

If you have dependents and a disability rating of 30% or higher, you may qualify for additional compensation. Keep in mind that your disability benefits may be offset by military retirement pay, disability severance pay, or separation incentive payments.

Available Benefits for Disabled Veterans

Disability Compensation

This tax-free monthly income is paid to veterans disabled by an injury or disease incurred or aggravated during active military duty. This includes physical conditions, such as chronic back or knee issues, as well as mental health conditions like post-traumatic stress disorder. For those on inactive duty training, the disability must result from an injury, heart attack, or stroke. Dependents may also qualify for benefits.

Special Monthly Compensation

You may receive additional compensation beyond the basic rate if your disability involves any of the following:

Loss of or loss of use of specific organs, sensory functions, or extremities.
Disabilities that confine you to your home or make you bedridden and in need of assistance.
Combinations of severe disabilities that significantly impact your ability to walk.
Independent disabilities or multiple conditions, each rated 50% or 100%.
Multiple disabilities that require special skilled assistance, without which you would be confined to a nursing home.

To apply for these benefits, ensure you have all necessary documents ready, including your discharge or separation paperwork (DD214), and medical records from military or private providers supporting your claim.

Open an eBenefits account at www.ebenefits.va.gov for easy access to benefits.

For more information on filing your claim, visit www.benefits.va.gov/transformation/fastclaims.

Presumptive Benefits

Many of you may already be aware of Presumptive Benefits, which apply to veterans with service-connected disabilities linked to certain conditions of service, including:

Former prisoners of war
Gulf War veterans with undiagnosed illnesses or medically unexplained chronic multisymptom illnesses
Veterans exposed to Agent Orange

Clothing Allowance

Veterans may be eligible for one or more annual clothing allowance payments if:

You use a prosthetic or orthopedic device due to a service-related disability.
You have a service-connected skin condition and use medication that causes irreparable damage to your outer clothing.

To receive payment, you must establish eligibility by August 1st of the year for which you are claiming. To apply, contact the prosthetic department representative at your VA center.

Automobile Allowance

If your military service has resulted in a disability that requires vehicle modifications for you to drive, you may be entitled to a one-time allowance paid directly to the seller of the vehicle. Your impairment must include one of the following:

Loss of or permanent loss of use of one or both feet or hands
Permanent vision impairment in both eyes that makes driving impossible, even with corrective lenses
Certain severe burns

You may also qualify to purchase adaptive equipment, such as adaptive steering, power brakes, power windows, or other modifications if you have mobility issues in the joints of one or both knees or hips.

To apply, contact your nearest VA regional office or center, or call 1-800-827-1000 for assistance.

Housing Grant

One of the most well-known benefits is the Housing Grant:

Specially Adapted Housing (SAH) Grant:
This grant helps service members and veterans with permanent and total service-connected disabilities to purchase, construct, or modify a home to accommodate their disability.
Special Housing Adaptation (SHA) Grant:
This grant assists qualifying veterans in adapting or purchasing a home to meet their needs.

Grant amounts are set by law but may be adjusted based on the construction cost index. The grant can be used up to three times, not exceeding the total aggregate amount.

For more information or to apply for adapting your home, purchasing a home that needs adaptation, or modifying a family member's home, visit www.ebenefits.va.gov or download the form (VA Form 26-4555) at www.va.gov/forms. You can also call 1-800-827-1000 or use TTY via the federal relay number at 771. For additional details on the SAH/SHA grant programs, please visit www.benefits.va.gov/homeloans.

Veterans’ Mortgage Life Insurance (VMLI)

Similar to regular mortgage insurance, Veterans’ Mortgage Life Insurance (VMLI) helps families pay off the mortgage after the death of the service member or veteran. There are certain prerequisites:

Eligibility:
VMLI is available to service members or veterans with severe service-connected disabilities who have:

Received a Specially Adapted Housing (SAH) Grant from the VA for building, remodeling, or purchasing an adapted home
Their name on the home title
A mortgage on the home
Applied for VMLI before their 70th birthday

How it Works:
VMLI is automatically issued after SAH approval, provided the necessary information is submitted to establish a premium, unless coverage is declined. Coverage ends automatically when the mortgage is paid off. If you sell the home, you can transfer VMLI to the mortgage of a new home.

Premiums vary based on your age, the outstanding mortgage balance at the time of application, and the remaining term of the mortgage. VMLI is a decreasing term life insurance policy, and all premiums are deducted monthly from your compensation.

Service-Disabled Veterans' Insurance (S-DVI)

Life insurance is available to veterans with a service-connected disability who are otherwise in good health. To qualify, you must meet the following criteria:

Have an honorable discharge on or after April 25, 1951
Receive a rating for a service-connected disability of 0% to 100%
Be in good health except for service-connected conditions
Apply within two years from the date you are notified by the VA about your new service-connected disability

The premium amount depends on your age, the type of insurance plan (term or permanent life), and the requested death benefit. Note: If you have basic Service-Disabled Veterans' Insurance (S-DVI) coverage and are rated 100% disabled, you may apply to have your premiums waived.

Additionally, you may qualify for Supplemental Insurance if you have a Supplemental Service-Disabled Veterans' Insurance (S-SVI) policy and your premiums are waived due to total disability. You must apply within one year of receiving the premium waiver notice and be under 65 years of age.

Vocational Rehabilitation and Employment (VR&E)

These benefits are designed for service members and veterans with service-connected illnesses and injuries. The VA evaluates your interests, aptitudes, and abilities, and assesses how your disability impacts your ability to work. This program offers career counseling and rehabilitation planning, including job training, job-seeking skills, resume development, and more. Additional benefits include on-the-job training, apprenticeships, and non-paid work experiences. For those severely disabled and not ready to work, independent living services are also available.

Eligibility Requirements:

You have a service-connected disability rating of at least 10% from the VA, or a pre-discharge disability rating of 20% or more.
You have received or will receive an other-than-dishonorable discharge.
If referred to a military Physical Evaluation Board or participating in the military/VA Integrated Disability Evaluation System process, you may qualify without a VA rating.

Generally, veterans must use all Vocational Rehabilitation and Employment (VR&E) services within 12 years from the later of the following dates:

The date of separation from active military service.
The date the VA first notified you of a qualifying service-connected disability rating.

Education Assistance

This program provides education benefits to Veterans to assist with obtaining a degree or pursuing other eligible education and training.

Dependents Educational Assistance (DEA): Assists survivors or dependents of Veterans to obtain a degree and pursue other eligible education and training.

Always Review Your Benefits

It's crucial for veterans to review their available options. Financial assistance can address various issues and concerns, significantly reducing financial uncertainty and distress.

Are you interested in exploring financial resources for blood cancer patients? HealthTree Foundation offers free connections with financial coaches who volunteer their time to answer questions about insurance, prescription coverage, and more. They also help connect patients and their loved ones to valuable resources. You can reach out to them using the contact information below:

Patrick Kelley- patrickkelley072@gmail.com
Dave Braucht- flatdog@earthlink.net
Ken Levy - kenplevy@sbcglobal.net
Diahanna Vallentine- myfinancialcoach@healthtree.org

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Blood cancers, a group of cancers affecting the blood and bone marrow, often present with subtle symptoms that can be easily overlooked. Early detection is key to improving outcomes and increasing treatment success rates. This Blood Cancer Awareness Month, we're empowering you with the knowledge to recognize potential warning signs and take proactive steps for your health.

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Common Symptoms to Watch For

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While blood cancers can manifest in various ways, some common symptoms include:

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Unexplained fatigue: Feeling unusually tired or weak, even after adequate rest.
Sudden weight loss: Losing a significant amount of weight without any changes in diet or exercise.
Frequent infections: Experiencing more infections than usual or taking longer to recover.
Easy bruising or bleeding: Noticing bruises or bleeding easily, even from minor injuries.
Swollen lymph nodes: Feeling enlarged lymph nodes in the neck, armpits, or groin.
Bone pain: Experiencing persistent pain in the bones, often in the back or ribs.
Changes in the skin, such as unexplained rashes, itchy skin, or a sore that does not seem to heal
Frequent fevers or experiencing night sweats on a regular basis
Persistent headaches, difficulty breathing, feeling faint or lightheaded, or noticing a rapid or irregular heartbeat

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Don't Ignore the Signs

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If you experience any of these symptoms, it's essential to consult your doctor promptly. While other conditions can cause these symptoms, it's crucial to rule out blood cancer as a possibility.

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Early diagnosis is crucial as it often allows for more treatment options and better outcomes. When blood cancers are detected at later stages, they may have already caused significant damage to the body, making treatment more complex and potentially less effective. In some cases, a delayed diagnosis can limit access to treatments like stem cell transplants, which are often most successful when performed earlier in the disease course.

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Taking Action: Knowledge is Power

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This September, join HealthTree Foundation for our upcoming "Innovation in Blood Cancer" webinar on September 30th. This informative session will feature a panel of experts in hematology who will discuss the latest advancements in blood cancer research, treatment, and care. The webinar is free and open to all patients and their loved ones.

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webinar registration

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!AD!

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By staying informed and proactive, we can work together to improve early detection rates and support those affected by blood cancer.

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HealthTree Foundation: Innovation that Saves Lives

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B-cell lymphomas are a type of blood cancer representing the majority (80-85%) of non-Hodgkin lymphomas (NHLs). NHLs are a diverse group of blood cancers that affect immune cells known as lymphocytes, with different symptom patterns and responses to treatment. NHL usually originates in lymphoid tissues like lymph nodes or spleen and can spread to other organs.

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How Can Lymphoma Alter Your Bloodwork?

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When diagnosed with lymphoma or facing a relapse, blood work is a crucial part of monitoring the overall health. Blood tests can provide information about the body's condition and how lymphoma affects the normal body functions. In this article you’ll learn the most common alterations in blood work that lymphoma patients might experience, what each value means, normal ranges, and why these values can be altered.

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Complete Blood Count (CBC)

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A Complete Blood Count (CBC) is a common blood test that provides important information about the different cells that constitute your blood. Blood cells are produced in the bone marrow. When lymphoma cells invade the bone marrow, they can crowd our healthy bone marrow cells, making it difficult for the normal production of blood cells to occur. This is why patients with lymphoma often experience altered blood cell counts in their test results.

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White Blood Cells (WBC)

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Normal range: 3.2-10.6 k/ul
What it means: White blood cells are crucial for fighting infection. Lymphocytes and neutrophils are types of white blood cells.
Why it’s altered: Lymphoma can either increase WBC counts due to the overproduction of abnormal lymphocytes (lymphocytosis) or decrease WBC counts if the disease affects the bone marrow’s normal function (neutropenia). Due to the essential role of these cells in the immune system’s defenses, altered counts will always be linked to an increased risk of infection or an active infection.

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Red Blood Cells and Hemoglobin (Hb)

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Normal range: 12.1-15.9 g/dL
What it means: Hemoglobin is the protein in red blood cells (erythrocytes) that carries oxygen throughout your body.
Why it’s altered: Lymphoma cells invading the bone marrow can decrease the production of red blood cells, leading to lower hemoglobin levels, which is commonly known as anemia.

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Platelets

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Normal range: 150 - 440 k/ul
What it means: Platelets are fragments of a cell called megakaryocyte that circulate in the blood and play a crucial role in blood clotting and wound healing.
Why it’s altered: If lymphoma affects the bone marrow, it can result in a low platelet count, known as thrombocytopenia, which can lead to an increased risk of bleeding and bruising.

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What is Other Blood Tests Can Detect Lymphoma?

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Lactate Dehydrogenase (LDH)

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Normal range: 100 - 253 or 300 - 600 U/L
What it means: LDH is an enzyme found in almost all body tissues, and high levels can indicate tissue damage. The range varies greatly in this lab value for many reasons: each laboratory has a different range for what's considered normal. Your lab report should show the range that your lab uses for each test. Another reason is that your doctor will look at your results and, based on age, health, and other factors, will make a full-picture interpretation of what might be happening in your body. A value that isn't in the normal range may still be normal for you.
Why it’s altered: Elevated LDH levels are common in lymphoma patients and can indicate the presence and extent of disease and be a marker of tumor burden.

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Erythrocyte Sedimentation Rate (ESR)

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Normal range: 0 to 22 mm/hr for men, 0 to 29 mm/hr for women, but it gradually increases with age.
What it means: ESR is a test that indirectly measures the amount of inflammation in the body. It measures the rate at which the red blood cells, or erythrocytes, fall to the bottom of a blood sample tube.
Why It’s altered: Elevated ESR can be seen in lymphoma due to the inflammatory response caused by the disease.

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Beta-2 Microglobulin (β2M)

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Normal range: 0.70 to 1.80 mg/L
What It means: Beta-2 microglobulin is a protein found on most cells' surfaces, but some, particularly lymphocytes, release it into the blood. β-2 microglobulin is usually elevated in some cancers, inflammation diseases, and kidney disease.
Why it’s altered: In lymphoma, high levels of β-2 microglobulin can indicate a higher number of lymphoma cells or tumor burden, making it a useful marker for diagnosis and prognosis.

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Liver Function Tests (LFTs)

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What they mean: These tests assess liver function.
Why they’re altered: Abnormal levels can indicate that lymphoma cells are invading the liver. Side effects from some treatments can also produce changes in liver function.

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$\"\"$

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Liver function tests measure the levels of enzymes and proteins in the blood produced by the liver. They are an indicator of the liver health status and they can also alert if there are obstructions in the biliary tract. The indicators for liver functions are:

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Alanine aminotransferase (ALT): is an enzyme that can be elevated when the liver is damaged by viral infection, fibrosis (cirrhosis), non-alcoholic steatohepatitis, also known as fatty liver, and drug toxicity. In rarer cases, it can also be elevated when there are muscle injuries from trauma or excessive exercise. \n\n\t
- Normal range: 7 to 56 units per liter
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Aspartate aminotransferase (AST): is also an enzyme used to measure liver health, however, it is less specific because it can be found in other tissues. \n\t
- Normal range: 10 to 40 units per liter
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Alkaline phosphatase (ALP): is an enzyme that also helps determine the functioning of the liver and gallbladder or identify concerns with the bones. Its function in the body is important in calcium metabolism. It can also be helpful as an infection or inflammation indicator.\n\t
- Normal range: 44 to 147 units per liter
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Bilirubin: It is the product of red blood cell metabolism, and it also helps break down food in the digestive system. It has a yellow color, and high bilirubin levels can alter the skin color and make it yellow. In more severe cases it can also tint the eyes yellow; this condition is called jaundice. When bilirubin levels are low, it can produce a rare condition called acholia, where the stool is white instead of brown, and choluria, when the urine color is black as a cola soda. This can happen when there is a bile tract obstruction.\n\t
- Normal range: 0.1 to 1.2 milligrams per deciliter
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Monitoring blood work is essential for managing lymphoma. Understanding these common alterations can help you navigate your health status and engage in more informed discussions with your healthcare team. Consult your healthcare provider to interpret your results and develop a personalized care plan.

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Take control of your care with HealthTree Cure Hub!

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With HealthTree, you can continue learning about lymphoma, discover treatment options, find a specialist or a clinical trial, and so much more! Sign up for a free patient account today to get started.

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CREATE MY FREE ACCOUNT

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Sources:

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https://emedicine.medscape.com/article/202677-overview#a2
https://healthtree.org/myeloma/community/resources
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It’s no secret that in the United States, a cancer diagnosis can translate into a significant financial burden for the patient and their family. Thankfully, action is being taken in the national legislature to decrease spending for Americans on Medicare.

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Many Americans add Medicare Part D to their standard Medicare Plan to cover prescription drug costs. Today, we will discuss the 2024/2025 Medicare Part D updates and how they can benefit blood cancer patients on Medicare.

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Review of Medicare Part D Stages and 2023 Medicare Part D Changes

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Thanks to the Inflation Reduction Act of 2022, significant changes to Medicare went into effect, including coverage updates to Medicare Part D.

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There are 4 parts to the Medicare Part D coverage in which drug costs are covered at varying levels by the enrollees themselves, drug manufacturers, Part D plans, and Medicare itself.

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Beginning in 2023, Part D Enrollees paid $505 for their deductible and 25% of total drug costs, up to the “Catastrophic Threshold”.

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You can see the four stages and the state of each phase in 2023 below.

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To understand the catastrophic phase, those enrolled in Part D reach the catastrophic threshold when their out-of-pocket amount, plus the value of the manufacturer discount on the price of brand-name drugs in the coverage gap stage, exceeds a certain dollar amount.

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This amount has changed historically, and further changes will be made in 2024/2025.

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In 2023, after enrollees reached the catastrophic threshold, the enrollees paid 5% coinsurance of their prescriptions.

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2024 Changes to Medicare Part D Coverage

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This year, changes to Medicare Part D coverage include eliminating the 5% coinsurance that enrollees had to take on after they had reached the catastrophic threshold in 2023.

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Instead, they will have a spending cap and not have to contribute anymore after reaching the catastrophic threshold of $8,000 (in 2024). With the value of the manufacturer price discount on brands factored in, this means that enrollee out-of-pocket costs would sit around $3,300.

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This will save thousands of dollars for blood cancer patients, who often pay exuberant out-of-pocket costs for treatments such as Revlimid (BMS, Celgene), Pomalyst (BMS), Imbruvica (AbbVie, Janssen Biotech), or Jakafi (Novartis).

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The table below, provided by KFF, the independent source for health policy research, polling, and news, shows the extreme savings this could give to patients paying for high-cost drugs/treatments.

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Other updates this year include an increase in Part D Plan contributions. Previously, they covered 15% of total drug costs in the catastrophic stage, but they will now cover 20%.

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2025 Changes to Medicare Part D Coverage

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There are more changes to come in 2025 to Medicare Part D plans and coverage including:

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A $2000 out-of-pocket maximum for enrollees
Getting rid of the coverage gap phase
A higher share of drug costs paid by the Part D plan in the catastrophic phase
New manufacturer price discount in the catastrophic phase
Changes to plan costs and manufacturer price discount in the initial coverage stage (after deductible)

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Because of the new $2000 out-of-pocket maximum, for a cancer patient usually paying around $3300 (as mentioned in the last section), this provides annual savings of at least $1300.

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As you might remember from above, the coverage gap stage was previously between the initial coverage stage (after the deductible) and before the catastrophic stage. Below is the image for reference again.

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In 2025, the coverage gap stage will no longer exist. This means that Part D enrollees will no longer be responsible for the cost of a given drug after they move from the initial coverage stage to the coverage gap stage. Interestingly enough, this is actually what occurs within most Part D plans today, but it’s nice to have it in writing.

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Other plan changes in 2025 include Part D plans and drug manufacturers paying a larger amount of costs for catastrophic coverage, with Medicare paying a smaller share.

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!AD!

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Action Steps

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Medicare can be frustrating and confusing. Our coaching program offers free 1:1 help from a financial coach.

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Are you a myeloma patient? Sign up for a free account and filter for “Health Insurance/Financial Resources”
If you or a loved one has a different blood cancer, email Diahanna Vallentine to receive help.

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Conclusion

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In conclusion, the upcoming changes to Medicare Part D in 2024 and 2025 offer significant financial relief for blood cancer patients and other Medicare beneficiaries. Eliminating the 5% coinsurance, introducing a spending cap, and removing the coverage gap represent monumental steps toward reducing the financial burden of prescription drugs.

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With these reforms, patients will have more predictable and manageable out-of-pocket costs, allowing them to focus on their health rather than the high cost of treatment. As these changes take effect, they mark a crucial turning point in making life-saving medications more accessible and affordable for those who need them most.

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Sources:

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Thank you to KFF for their excellent coverage of this topic and the excellent graphics throughout this article.

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Changes to Medicare Part D in 2024 and 2025 Under the Inflation Reduction Act and How Enrollees Will Benefit

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!AD!

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I often receive questions about whether insurance will cover clinical trials, second opinions, and telehealth. I’ll break it down for you in this article.

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The first thing you need to do is know your insurance! I say this a lot, but it really is your foundation of care. Knowing your insurance every step of the way in your treatment journey is important so that you can be proactive and make changes to your insurance plan as needed.

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Understanding the Out-of-Pocket Costs for Clinical Trials

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If you want to participate in a clinical trial, work with your treating physician to find a local one you qualify for. Willing to travel? That may increase the cost, but you can look for clinical trials here: HealthTree Clinical Trial Finder (scroll down on the page to search for clinical trials for your type of cancer).

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After you’ve found a clinical trial, talk to the clinical trial coordinator to see what costs they cover. This will usually come through the clinical trial sponsor. Once you discover what they will pay for as part of the trial, determine what your insurance will pay for and what you will be responsible for prior to signing on the dotted line on the clinical trial contract.

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Steps for Understanding Coverage

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First, determine where the trial is being conducted. This will determine whether it is charged as in-network or out-of-network with your insurance. Be aware that some insurance plans do not cover out-of-network, so double check with both the trial hospital location and your insurance that coverage will apply.

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Estimate additional costs such as lodging, transportation, and food. Also, consider childcare costs if applicable.

\n\n

Be aware that insurance may not cover some lab tests, your co-pays, or deductibles while in the clinical trial. However, your insurance must cover medically necessary routine care costs in clinical trials.

\n\n

For a clinical trial to be approved, it must have a written protocol already approved by an Institutional Review Board. Sometimes to be covered, the trial must be for a life-threatening condition. Remember, this can be interpreted differently by insurance plans.

\n\n

There are Grandfathered insurance plans that may not cover trial participation. Grandfathered plans existed prior to the ACA enactment in March 2010.

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Some clinical trials are known as paid clinical trials. These are usually Phase I trials in which the potential treatments need to be better understood, and it might be the first time these treatments are used within humans. Dosaging and side effects may be undetermined. Therefore, paid clinical trials also usually involve more risks.

\n\n

Fortunately, these trials usually reimburse you for your trial or will pay for childcare and travel costs. Always check with the trial sponsor before signing up to know what your covered and uncovered costs will be.

\n\n

Tips for Getting Your Insurance to Cover Clinical Trial Costs

\n\n

Here are steps you can take ahead of time to possibly reduce problems later.

\n\n

Collect journal articles from prior studies that explain the potential benefit of the treatment.
Have your doctor submit a letter that explains the trial or why the trial is medically necessary for you.

\n\n

Give your insurance provider letters from any outside supporters of the trial, such as patient advocacy groups.

\n\n

So, will insurance cover clinical trials? It’s not an easy “yes or no,” but it is possible for them to cover the costs if they deem it necessary.

\n\n

Will Insurance Pay for Second Opinions?

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At some stage of your cancer journey, you might find it necessary or desirable to seek a second opinion from a different facility.

\n\n

Second opinions give you a fresh perspective and additional options so you can make a more informed decision regarding your treatment.

\n\n

Additionally, you may require a third opinion, particularly if there’s a huge difference between your first and second opinion. It is essentially a tiebreaker when the first two opinions are so different.

\n\n

If you have Medicare Part B (traditional Medicare), it will cover the second opinion at 80%. The remaining 20% is covered through a supplement plan if you have one. If you don’t have a supplemental plan, you are responsible for 20%. You do not need a referral from your doctor.

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If you’re covered under a Medicare Advantage Plan, you are also covered for second opinions. However, you may need to take additional steps to make this happen.

\n\n

You may need to get a referral from your doctor.
You may have to consult with a doctor in their designated network. (Sometimes second opinion doctors reside in the same practice). Be aware of your insurance provider's guidelines.

\n\n

There’s a good argument for getting a second opinion from an unaffiliated practice. Hospitals and practices can be uniform when it comes to treatment recommendations.

\n\n

You can either ask your doctor for an unaffiliated practice or search through Medicare’s Care Compare Tool at: Medicare.gov/care-compare.

\n\n

You can also search your plan's website for a second opinion to obtain a list of candidates.

\n\n

To prevent duplication of tests, make sure your second opinion doctor has your medical records ahead of time. No one wants to have extra biopsies. If your second opinion doctor requires additional tests, they will be covered by your insurance.

\n\n

Commercial insurance carriers will generally always pay for second and, if necessary, third opinions.

\n\n

Does Insurance Pay for Telehealth Services?

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Telehealth became very popular during the era of COVID-19 because you could have an appointment with your doctor without going into the office. It offers a wide range of medical care services, including primary care and urgent care.

\n\n

The cost of telehealth visits can vary, so it would be a good idea to check with your insurance company beforehand to avoid surprise billing. The costs also can vary depending on your health insurance coverage, health condition, and health care provider.

\n\n

The costs associated with a primary care telehealth provider will be less than a telehealth visit with a specialist. Also, a telehealth visit for general medical advice will probably be significantly less expensive than a telehealth visit with a cancer specialist.

\n\n

Your insurance may pay a portion of your telehealth visit or the entire visit cost. Your plan may or may not require you to pay co-pays, deductibles, or coinsurance. The point is to know your insurance, prior to using a service. You can always call the provider to ask about coverage.

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Medicaid has expanded in most states, but Medicaid reimbursements vary from state to state. To learn how your state has broadened telehealth coverage, go to: www.cchpca.org.

\n\n

What are some of the telehealth service providers that Medicare will cover?

\n\n

Doctors
Nurse Practitioners
Licensed Social Workers

\n\n

Again you may still be required to cover copays like you would do for regular office visits. Additionally, you will still be required to pay your Part B deductible. You may also still need prior authorization for the telehealth visit.

\n\n

Can You Save on Telehealth Visits?

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You can do cost comparison shopping via GoodRx Telehealth marketplace for common services across popular telemedicine apps.

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Because changes occur so often in the healthcare market, you need to keep abreast of possible changes for 2025.

\n\n

In 2024, you can get telehealth wherever you are located. You don't have to be at an originating site, where patients get physician or practitioner medical services.

\n\n

However, after December 2024:

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For non-behavioral or mental health, there may be originating site requirements and geographic location restrictions.
For behavioral or mental issues, all patients can continue to get telehealth wherever they’re located, with no originating site or geographic location requirements.

\n\n

Conclusion

\n\n

Know your insurance and understand your coverage as much as possible before making any decisions about clinical trials, second opinion visits, or telehealth appointments. Be proactive in your care. Take advantage of the resources that are available to you and ask the right questions of your healthcare team.

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If you would like to connect with me about financial resources for your blood cancer, you can email diahanna@healthtree.org. If you are a multiple myeloma patient, sign up for a free 1:1 visit with a financial coach by creating a profile at HealthTree Myeloma Coach and finding a coach that’s right for you.

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For those of you who are continuing to work at Medicare age, you may be confused as to how your employer insurance will continue to work when Medicare is on the table.

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It isn’t as simple as you may think, and you should contact your employer's benefits department to make sure you understand their requirements.

\n\n

Additionally, if your employer covers additional family members, you need to be aware of how the decisions you make might affect their coverage as well.

\n\n

Understanding Medicare Laws Based on Your Employer

\n\n

If you are 65 and older and still employed, you might ask yourself, “Can my employer force me to take Medicare?”

\n\n

The Omnibus Reconciliation Budget Act of 1980 created a Medicare Secondary Payer program to ensure that Medicare does not pay for items and services that other health insurance programs are responsible for.

\n\n

For this to be effective, they had to determine who paid for the service and items first. The primary payer is the insurance company responsible for paying the insurance claim first, up to its limits (the primary insurance).

\n\n

The secondary payer covers the remainder of the costs that the primary did not cover up to its limits. A company's number of employees determines who the primary and secondary insurance plan will be.

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How the Size of Your Company Affects Your Coverage

\n\n

Employers with 20 or more employees are considered large employers. They must offer the same primary insurance to their employees who are 65 years old or older and their spouses as offered to all their other employees. Under no circumstances can they offer any incentives to the older employees to terminate their coverage with them to force them to enroll in Medicare. So, employer-provided insurance is the primary insurance for people employed by companies with more than 20 employees.

\n\n

It then follows that an employer with 20 or fewer employees is considered a small employer, and the insurance for employees covered in the employer insurance plan is secondary to Medicare.

\n\n

Additionally, the employer can terminate the employee's insurance plan and require the employee to enroll in Medicare. It is totally up to the employer. They do not have to offer insurance to employees 65 years or older as they would to all other employees.

\n\n

According to the Age Discrimination in Employment Act, age-related discrimination is not considered when a small employee terminates the employer insurance coverage for a Medicare-eligible employee.

\n\n

This would only apply to private employers with 20 or more employees, state and local employers, employment agencies, labor organizations, and the federal government.

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Conclusion

\n\n

When considering your options, acquire accurate information from your employer's benefits department and Medicare.gov. Being prepared can prevent you and your family from a gap in insurance coverage.

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If you would like 1:1 support with financial resources, you can meet with a Financial Coach to learn more about what's available to you and your loved ones.

\n\n

If you have multiple myeloma, sign up for a free profile at HealthTree Myeloma Coach. Browse for your own coach and filter for "Health Insurance/Financial Resources"
If you have any other type of blood cancer, email our Financial Program Manager, Diahanna Vallentine, to get started.

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Chimeric antigen receptor T-cell (CAR-T) immunotherapy is an effective approved treatment for people with certain types of lymphoma, including diffuse large B-cell lymphoma (DLBCL) and follicular lymphoma. However, recent studies have shown significant disparities in access and outcomes based on race and insurance status. This article delves into understanding these inequalities and their potential implications for patients.

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Racial Disparities in CAR T-Cell Therapy

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A study published recently examined the impact of race and insurance on CAR T-cell therapy outcomes for patients with lymphoma. While the study found no difference in treatment efficacy or toxicity based on race, it uncovered stark disparities in access to the clinical trial. Black patients were significantly underrepresented in the study population, suggesting potential barriers to referral or eligibility.

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\n
“In a real-world analysis of 1,389 patients receiving axicabtagene ciloleucel for DLBCL, 81% were White, 5% were AA, 6% were Asian, and 11% were Hispanic.”
\n

\n\n

Moreover, patients from lower socioeconomic backgrounds, often disproportionately represented by minority groups, were less likely to receive CAR T-cell therapy. These findings underscore the complex interplay between race, socioeconomic status, and access to advanced cancer treatments.

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Insurance and Access to CAR T-Cell Therapy

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The study explored the impact of insurance on access to CAR T-cell therapy. The study found that Medicare patients benefited the most from these therapies in terms of survival, although it could also be explained by a less aggressive disease in the studied group. Consistent with findings in other oncology studies, Medicaid patients had shorter survival when treated with CAR-T, which can be associated with more advanced or aggressive disease.

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The Role of Social Determinants of Health

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The authors emphasized the importance of social determinants of health (SDOH) in shaping CAR T-cell therapy experiences. SDOH, such as income, education, and neighborhood environment, can significantly influence a patient's overall health and well-being. The study highlighted the need for a comprehensive approach to addressing cancer disparities, focusing not only on biological factors but also on the social context in which patients live.

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\n
“Disparities in outcomes for patients receiving CAR-T are likely just the tip of the iceberg and do not account for the many patients who are candidates for CAR-T but are either not referred or unable to be treated. Larger studies are needed to tease out the role of race vs. other social determinants of health, such as distance to the treatment center, income, and available social support, in CAR-T outcomes.”
\n

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Implications and Future Directions

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Real-world studies underscore the urgent need to address racial and socioeconomic disparities in CAR T-cell therapy access and outcomes. While the reasons behind these disparities are complex and multifaceted, potential factors include differences in healthcare provider bias, insurance coverage, and patient education.

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In order to tackle this problem, it will be necessary for patient advocacy groups, community oncology practices, national societies, and government organizations to collaborate. Researchers and healthcare providers need to work together to find and apply strategies that enhance the availability of CAR T-cell therapy for all patients. This may require focused outreach and educational initiatives, as well as policy adjustments to address insurance coverage and reimbursement obstacles.

\n\n

Furthermore, additional research is necessary to elucidate the specific mechanisms underlying these disparities and to develop interventions tailored to the unique needs of underserved populations. By prioritizing equity and inclusivity, we can work towards a future where all patients have equal opportunities to benefit from the promise of CAR T-cell therapy.

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People who are educated about their care live longer, better lives. At HealthTree, we are committed to providing the most accurate and up-to-date information about lymphoma. Whether you are looking for a specialist, need help interpreting test results, or want to learn about the latest treatments, we have what you need.

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Explore HealthTree's Free Educational Resources

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Sources:

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The exact cause of non-Hodgkin lymphoma (NHL) is not fully understood. Several risk factors, including autoimmune disease, have been identified that may increase the likelihood of developing NHL. While the link between autoimmune disease and NHL has been well established, exactly how or why they are linked is an area of ongoing research.

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Can Autoimmune Diseases Be Mistaken for Lymphoma?

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There is some overlap between the symptoms of autoimmune disease and NHL. The majority of autoimmune diseases have the potential to cause lymph node swelling, which is also one of the main symptoms of NHL. In particular, rheumatoid arthritis, systemic lupus erythematosus, and Sjögren’s syndrome are associated with swollen lymph nodes. A lymph node biopsy may be used to confirm whether the swelling is a result of NHL.

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!AD!

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Can Autoimmune Diseases Cause Lymphoma?

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Several autoimmune diseases are considered risk factors for NHL. One analysis of almost 30,000 patients with NHL demonstrated an association between autoimmune disease and subtypes of NHL, including:

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Sjögren’s syndrome
Systemic lupus erythematosus
Hemolytic anemia
Celiac disease
Psoriasis
Rheumatoid arthritis

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Patients with Sjögren’s syndrome were 6.6 times more likely to develop NHL than those without. Sjögren’s syndrome was specifically associated with marginal zone lymphoma, diffuse large B-cell lymphoma, and follicular lymphoma. Sjögren’s syndrome had a very strong association with parotid gland marginal zone lymphoma, with patients with Sjögren’s syndrome 1000 times more likely to develop parotid gland marginal zone lymphoma than those without.

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Patients with systemic lupus erythematosus were 2.7 times more likely to develop NHL, with a particular association with marginal zone lymphoma and diffuse large B-cell lymphoma.

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Patients with hemolytic anemia were 2.6 times more likely to develop NHL, especially diffuse large B-cell lymphoma.

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Celiac disease was not associated with NHL overall, but patients diagnosed with celiac disease over the age of 32 did have an increased risk. Patients with celiac disease had a substantially higher risk of developing enteropathy-associated T-cell lymphoma and anaplastic large-cell lymphoma. Patients with celiac disease were also 30 times more likely to develop small intestinal NHL.

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Psoriasis was not associated with NHL overall, but there was an increased risk of developing T-cell NHL, particularly anaplastic large-cell lymphoma.

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Rheumatoid arthritis was not associated with an increased risk of NHL overall, but the results did vary. Patients who received treatment for rheumatoid arthritis with corticosteroids or immunosuppressants did have an increased risk of NHL.

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!AD!

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How Does Autoimmune Diseases Cause Lymphoma?

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While the exact reason autoimmune disease may cause NHL is unknown, several factors may explain the connection.

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The immune system's reaction to autoimmune disease may cause long-term inflammation and increased activation of B-cells and T-cells. Treatment for autoimmune diseases, such as immunosuppressants, may also contribute to the increased risk of NHL. Shared environmental risk factors for autoimmune disease and NHL may also play a role. An overlap in genetic mutations associated with autoimmune disease and NHL has also been suggested as a potential mechanism, although one study found this association to be weak.

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Does Autoimmune Diseases Affect Prognosis in Patients with Lymphoma?

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An analysis of patients treated at the Mayo Clinic found that a history of autoimmune disease did not affect the outcomes of patients with lymphoma. However, autoimmune diseases involving B-cells (such as rheumatoid arthritis, Sjögren’s syndrome, or systemic lupus erythematosus), particularly rheumatoid arthritis, were associated with a worse prognosis in patients with mantle cell lymphoma and Hodgkin lymphoma.

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Key takeaways

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Some symptoms of autoimmune disease and NHL overlap, particularly swollen lymph nodes.
Several autoimmune diseases have been linked to an increased risk of developing NHL.
The exact way in which autoimmune diseases contribute to the development of NHL is not fully understood.

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Join the HealhTree community to learn more about your disease and attend our next free webinar!

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EXPLORE HEALTHTREE EDUCATION

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Sources:

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\n","language":"EN","metaDescription":"Autoimmune disease is a known risk factor for NHL. Exactly how or why they are linked is an area of ongoing research.","metaTitle":"Can Autoimmune Diseases Cause Lymphoma?","publishedAt":{"_type":"Date","value":"Tue Jun 25 2024 04:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"What autoimmune disease can be mistaken for lymphoma, Can autoimmune diseases cause lymphoma, Lymphoma, non Hodgkin Lymphoma, NHL, non Hodgkin’s lymphoma, non Hodgkin follicular lymphoma, non Hodgkin’s follicular lymphoma, lymphoma causes, non Hodgkin lymphoma causes, lymphoma risk factors, non Hodgkin lymphoma risk factors, lymphoma autoimmune disease, non Hodgkin lymphoma autoimmune disease, lymphoma autoimmune disorder, non Hodgkin lymphoma autoimmune disorder, lymphoma Sjögren’s syndrome, non-Hodgkin lymphoma Sjögren’s syndrome, non-Hodgkin lymphoma Sjogren syndrome, non-Hodgkin lymphoma Sjorgens syndrome, non-Hodgkin lymphoma Sjorgen disease, non-Hodgkin lymphoma systemic lupus erythematosus, non-Hodgkin lymphoma lupus, lymphoma lupus, non-Hodgkin lymphoma hemolytic anemia, lymphoma hemolytic anemia, non-Hodgkin lymphoma celiac disease, lymphoma celiac, non-Hodgkin lymphoma celiac, lymphoma psoriasis, non-Hodgkin lymphoma psoriasis, lymphoma rheumatoid arthritis, non-Hodgkin lymphoma rheumatoid arthritis, non-Hodgkin lymphoma arthritis, lymphoma arthritis, marginal zone lymphoma, diffuse large B-cell lymphoma, follicular lymphoma, enteropathy-associated T-cell lymphoma, anaplastic large cell lymphoma, parotid gland marginal zone lymphoma","slug":"autoimmune-disease-cause-nhl","status":"ACTIVE","title":"Non-Hodgkin Lymphoma and Autoimmune Diseases","updatedAt":{"_type":"Date","value":"Tue Jun 25 2024 18:32:01 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/articles/cUk09k8fvcQsPdHiTVrW"},"snapshot":{"exists":true,"id":"cUk09k8fvcQsPdHiTVrW","ref":{"_type":"DocumentReference","path":"apps/community/articles/cUk09k8fvcQsPdHiTVrW"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/NRcFf0ATixvpHmsyX2JM"},"categories":[],"category":{"_type":"DocumentReference","path":"apps/community/categories/hn1DyzeAyX6tgl3gxSDx"},"createdAt":{"_type":"Date","value":"Tue Jun 11 2024 19:23:25 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},"diseases":[{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},{"_type":"DocumentReference","path":"diseases/WNjIFmDibXhTFneCh4dG"},{"_type":"DocumentReference","path":"diseases/t8f3E99OdM9XZe1d1ASM"},{"_type":"DocumentReference","path":"diseases/WCJo8IouncjDW6exT1YS"},{"_type":"DocumentReference","path":"diseases/myeloproliferative-neoplasm"},{"_type":"DocumentReference","path":"diseases/lymphoblastic-lymphoma"},{"_type":"DocumentReference","path":"diseases/lymphoma"},{"_type":"DocumentReference","path":"diseases/eBIxYtdHAYhTTs5L9bcC"},{"_type":"DocumentReference","path":"diseases/EkjGB5kileTKP2vnTWhV"},{"_type":"DocumentReference","path":"diseases/GMiulNhUPGrzlsCN3Fmv"},{"_type":"DocumentReference","path":"diseases/cll"},{"_type":"DocumentReference","path":"diseases/qfJSwjR5sHYmyCKUCUjA"},{"_type":"DocumentReference","path":"diseases/tDYO4O8HTJT5dAHT6xis"},{"_type":"DocumentReference","path":"diseases/mantle-cell-lyphoma"},{"_type":"DocumentReference","path":"diseases/marginal-zone-lyphoma"}],"headerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2Fvaccine_fabf4166-eb8d-4856-9149-0435001f739b.jpg?alt=media","htmlContent":"

Why are vaccines important for cancer patients?

\n\n

Cancer patients are often in a vulnerable immunologic state, due to a variety of factors. When speaking of blood cancers, this is a common issue amongst patients because the immune cells are produced in the bone marrow and circulate in the bloodstream to fight infections or detect abnormal cells. In blood cancers, this balance is often disrupted because the growth of abnormal cancer cells sometimes occupies the bone marrow or the affected cells are immune system cells.

\n\n

What factors weaken the immune system of cancer patients?

\n\n

Chronic inflammation
Hematopoietic stem cell transplant
CAR-T cell therapy
B-cell depleting therapy (a process that destroys malignant B-cells)
Impaired or diminished function of immune system cells
Treatments that debilitate the immune system like corticosteroids
\n\t

\n\n

Preventing infections in patients with a vulnerable immune system is fundamental. Several prevention strategies exist, like antibiotics or antiviral agents, but one of the most effective tactics since 1796 was vaccination when the smallpox vaccine was developed, and many lives were saved.

\n\n

Optimizing vaccination should be considered a key element for cancer patients

\n\n

Vaccination is an important measure to avoid infection-associated illness or death among patients with a weakened immune system.

\n\n

A recent interview by ASCO with Dr. Lisa Law from Kaiser Permanente and Dr. Randy Taplitz from City of Hope Comprehensive Cancer Center, authors on “Vaccination of Adults with Cancer: ASCO Guideline.”

\n\n

The doctors conducted a systematic review, analyzing over a hundred publications between 2013 and 2023, including randomized controlled trials and non-randomized studies, many of which the more recent studies contained information on COVID-19 vaccines. They did a compilation of recommendations based on evidence to create vaccination guidelines for cancer patients.

\n\n

For Vaccines, Timing is key

\n\n

Dr. Taplitz stated that for cancer patients, responding to vaccines can be affected by their immune status and their anticancer therapy, as well as the severity of the underlying cancer. The purpose of vaccination is to prevent infection or reduce the severity of the infection in case it can’t be prevented.

\n\n

Dr. Law mentioned the recommended vaccines for cancer patients based on age and risk:

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$\"\"$

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Procedures like CAR-T cell therapy or B-cell depletion therapy help patients with blood cancer but significantly impact their immune systems because they " erase” the body’s immune memory, and revaccination helps the immune system “remember” how to fight against infections that are a threat to non-vaccinated people.

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Dr. Randy Taplitz discussed the recommended timing of revaccination in patients according to the treatment stage, highlighting the important role of vaccines in restoring immunity.
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What vaccines should I get if I want to travel?

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Dr. Lisa Law mentions that following the CDC standard recommendations for the destination is sufficient when traveling outside the United States. However, vaccinations should be delayed until 3 months after the last round of chemotherapy. Dr. Law states that it is important to receive advice from your oncologist in all cases of travel to determine the best timing and to ensure you are not traveling to a location with a regional outbreak.

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Should my loved ones vaccinate with me?

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According to the updated recommendations, Dr. Randy Taplitz mentions that all household members and close contacts should be updated on their vaccinations. Vaccines like inactivated influenza, MMR (measles, mumps, and rubella), and varicella are safe to administer to close contacts.

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What can help improve vaccine research?

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Over time, vaccines have been proven to eradicate life-threatening diseases, and following the vaccination guidelines can protect vulnerable populations. Dr. Randy addresses powerful information regarding gaps in knowledge, such as the lack of perceived benefits from vaccines and unmet needs like vaccine costs and accessibility. He emphasizes the need for further research and dedicated efforts, mentioning that more cancer patient data is needed for developing more precise vaccine guidelines.

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You can also contribute to life-saving research through HealthTree Cure Hub by creating an account and responding to our vaccination survey. Being aware of your health status and vaccination history leads to improved self-advocacy and better disease outcomes!
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CREATE YOUR FREE HEALTHTREE CURE HUB ACCOUNT
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It's National Caregivers Month, and we are here to shed some light on the caregiver experience.

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While many caregivers or loved ones of non-Hodgkin lymphoma patients don't regret taking care of their loved ones, many times, they may feel overlooked and unvalued because so much of their "new life" is focused on the patient.

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It's easy to start feeling resentful, hurt, or frustrated because of this significant change in your life when your loved one is diagnosed. It's also normal to have these feelings reoccur intermittently throughout your non-Hodgkin lymphoma journey, no matter how long your loved one has been diagnosed.

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Whether you are a patient or a family member looking to support a non-Hodgkin lymphoma caregiver or you're the caregiver looking to take care of yourself, here are some suggestions to make a non-Hodgkin lymphoma caregiver's life a little easier.

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Ensure Time for Self-Care

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Between the doctor's appointments, prescription pickups, potential hospital stays, and other everyday life tasks, it can feel impossible for the caregiver to find time for themselves.

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If you are a patient or a loved one of this caregiver, ensure that they are taking time for themselves. If that means stepping in to help with transportation, grocery pick-up, or offering to take a daily walk with said caregiver, making sure they have time to take care of themselves is crucial.

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To the caregivers reading this article, carving time for self-care does NOT look like finding time to eat, scheduling more appointments, cleaning the house, etc. It means taking time for:

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a warm bath
a silent walk around the neighborhood
a dance party in the garage
a hobby (scrapbooking, knitting, gardening)
watching a movie

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Friends and loved ones can offer to cook meals, clean the house, or run other necessary errands for the caregiver this month in order to ensure time for self-care.

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Caregivers, while it may be hard to accept outside help at first, remember that you must put your oxygen mask on first before helping others. You want to make sure your cup is full so you can continue to give. Burnout can lead to serious health problems of your own, so make sure that you are making time to take care of yourself. You deserve it!

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Learn About The Disease

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If you are a patient or a loved one of a caregiver, learn more about non-Hodgkin lymphoma! While Dr. Google can be scary, there are many other options for non-Hodgkin lymphoma education, such as HealthTree's non-Hodgkin lymphoma 101 pages and non-Hodgkin lymphoma articles, where you can get caught up on the disease.

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Many caregivers that I have spoken to feel the burden of carrying the disease knowledge (and therefore the disease decisions) on their own. This can lead to intense stress and guilt on behalf of the patient. Having someone to share it with can be crucial to the caregiver's well-being.

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Caregivers, if you are feeling "behind" on disease knowledge, consider asking a loved one to learn more with you. If you are feeling overwhelmed by non-Hodgkin lymphoma news, give yourself permission to turn it off for a couple of days (or weeks) and focus on daily life around you. Carrying too much alone can be a burden.

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Show Up and Listen

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Sometimes, a regularly scheduled phone call or visit can be exactly what the caregiver needs. Take time to listen to them without interrupting and certainly without judgment. Knowing they have someone they can depend on will help them cope with the other stresses that their life is presenting.

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Caregivers, don't feel like a burden. Schedule weekly phone calls with a loved one or ask your neighbor to drop by once a week and check on how you're doing. Growing a consistent circle of support can help you feel in control of a situation (or diagnosis) you never expected to find yourself in.

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Conclusion

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Remember, supporting and caring for the caregiver is so important to everyone's well-being in a non-Hodgkin lymphoma journey. Don't feel like you can't do anything to help when you see your loved ones dealing with a non-Hodgkin lymphoma diagnosis. There's so much that you can do to be supportive and helpful.

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If you are a non-Hodgkin lymphoma caregiver seeking support, join our Non-Hodgkin Lymphoma Connect Group and start a thread in the general discussion, and remember to seek and accept help. You are not a burden, and you deserve support and care.

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Are you curious about what clinical trials are and the benefits of participating in one? Learn about how clinical trials work below. This new understanding can empower you to open the door to innovative treatment options for cancer.

What are Clinical Trials?

Clinical trials, also known as interventional studies, derive their name from being conducted for people or “clinical” subjects. They are led by a principal investigator (PI), who is usually a doctor. The goal of clinical trials is to improve patients' length and health-related quality of life through various medical interventions.

Areas covered by clinical trials may include:

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Comparing the current FDA-approved standard care medicines against newer, potentially more effective treatments
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Therapies that the FDA has approved, but they look at different ways of administering the treatments, such as in combinations or different doses
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Test how new treatments work for a particular disease in a controlled and closely monitored environment
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Strategies to reduce side effects related to cancer or its treatments
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Health-related quality of life patient surveys
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Evaluating new medical devices
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How Can Clinical Trials Benefit Me?

Possible benefits you may receive by participating in a clinical trial include:

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Early access to effective new treatments if they prove successful
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Enhanced medical attention from specialized healthcare professionals
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Thorough monitoring for any side effects
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An opportunity to actively participate in your healthcare decisions
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The chance to aid in the advancement of cancer research and help future patients
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The care you receive, including its treatments, may be fully financially covered by the study
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Possible risks of participating in a clinical trial may include:

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A trial can sometimes require more time and medical attention, such as doctor visits, phone calls, more treatments, a hospital stay, or a more complicated treatment regimen
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Side effects the doctor did not anticipate from the treatment
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New treatments are not always better than current treatments
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The new treatment may not work for you, even if it works for other patients
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If the study is double-blind, you may not know which treatment you’ll be assigned to take
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Is it Free to Participate in a Clinical Trial?

What you may pay for in a clinical trial can vary. Typically, the trial's sponsors cover the treatment, but associated care costs like blood tests might not be included and could require insurance coverage. Ask the principal investigator of the trial any questions you have regarding finances, such as whether expenses related to travel or meals during the study period are reimbursed.

To prepare against justifying the trial’s costs as medically necessary for your insurance, you might need to compile a packet of supportive materials, such as relevant medical studies, a letter from your doctor, or endorsements from patient advocacy groups. The trial coordinator can assist you in assembling these documents.

A note about NIH studies: Clinical trials conducted by the National Institutes of Health (NIH) are free with no insurance involved. Travel costs may be covered in certain cases.

Can I Get Paid to Participate in a Clinical Trial?

Some clinical trials, like Phase I studies involving healthy individuals, may offer compensation ranging from $10-$20 an hour. However, Phase I studies involving people with cancer generally do not pay for participation.

How to find paid clinical trials: To learn if the study you would like to participate in compensates volunteers, please read the trial’s informed consent form. You can also contact the study’s principal investigator for financial-related questions.

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How Do Clinical Trials Work?

Who Can Join a Clinical Trial?

Each clinical trial has rules called eligibility criteria that dictate who can join the study. These include inclusion and exclusion criteria and are set up to preserve the health-related safety of the participants.

Eligibility criteria may include factors like:

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Age
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Prior medications taken
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Cancer stage
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Cancer type
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Eastern Cooperative Oncology Group performance status (measures your ability to complete daily tasks)
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Health history (vaccination record, prior surgeries, comorbidities, active infections)
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Ability to understand and willingness to sign a written informed consent document
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These criteria are located on the trial’s page. If you have questions about the study’s criteria, please reach out to the principal investigator whose contact information is also listed on the trial’s page.

What is the Consent Process of a Clinical Trial?

Every clinical trial is governed by a detailed protocol, which includes the treatment plan, the types of medical tests participants might undergo, the number of participants involved, eligibility criteria, and safety information. An extensive informed consent process is integral to this, where potential participants are educated about the trial's objectives, duration, procedures, all potential risks and benefits, and the confidentiality of their medical records.

If you decide to join, you'll sign a consent form summarizing this information, which you can reference at any time. Importantly, signing the form does not waive your right to withdraw from the study at any point. Informed consent is an ongoing process, allowing for updates on trial progress, emerging side effects, or other risks as they become known.

What are the Phases of Clinical Trials?

Clinical trials are only conducted after preclinical research is finished, a period when the treatment is evaluated not on people. The medicine only moves forward into a clinical trial if there is enough evidence that the therapy has a good chance of helping individuals.

The phases of clinical trials include:

PHASE 0

Phase 0 trials are the first clinical trials that involve people. This phase aims to learn how a medicine is processed in the body, how it affects the body, and whether it reaches cancer cells. A minimal dose of medicine is given to about 10 to 15 people.

PHASE I

This phase is generally tested in a small group of 15 to 30 patients and seeks to find out:

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If the new treatment is safe (fewest side effects)
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The best way to give the new treatment, such as by mouth or by vein, and at what dose
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If there are signs that cancer responds to the new treatment
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PHASE II

Phase II trials are conducted in groups of less than 100 patients to further analyze the safety of medicines and determine whether they work.

PHASE III

The purpose of the phase III trial is to compare the new medicine to the current medicine it could replace. This phase monitors each medicine's side effects and determines which works better. It is tested in hundreds to thousands of patients.

Patients who enroll in a Phase III clinical trial have a chance of being in one of the following randomly selected groups:

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Control group: Receives the current standard treatment
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Study group: Receives the new treatment being tested
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You don’t get to choose which group you are in; this is assigned at random. You might also not know which group you’re in until the trial ends.

PHASE IV

Phase IV trials continue testing new medicines that the FDA has recently approved. The medicine is tested in hundreds to thousands of patients worldwide, allowing for a better understanding of its short—and long-term side effects, safety, and benefits.

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How Long Do Clinical Trials Take?

In general, the amount of time a study takes varies by phase. Other factors like how long it takes to enroll participants and what the study is trying to accomplish can also influence time.

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Phase I: The shortest phase, usually takes less than a year to complete
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Phase II: Often lasts up to two years
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Phase III: Can last up to 5 years
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Phase IV: Can last several years
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Phases II-IV of a clinical trial can often take several years because time is needed to study the long-term effects of a treatment. Your participation in the trial, however, may be shorter than its full duration because participants can join the study at different times.

Am I Allowed to Quit a Clinical Trial?

As a volunteer, you have the freedom to discontinue your involvement in a clinical trial whenever you choose. It is advisable to consult your doctor before making this decision to discuss potential health implications, the safest method to stop the medications, and alternative treatment options available to you. If you find that the clinical trial is not meeting your needs, you may opt to withdraw and explore other trials or different treatment approaches.

How Do I Find a Clinical Trial?

Now that you understand the gist of clinical trials, how do you find one that suits your needs? Strategies may include:

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Ask a cancer specialist about clinical trials you are eligible for
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Review HealthTree’s clinical trial finder by clicking here
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If you are not finding a clinical trial on HealthTree’s site, you can also visit clinicaltrials.gov for a more comprehensive list
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Stay tuned to HealthTree news articles, which cover some of the latest updates on blood cancer clinical trials
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Conclusion

Participating in a clinical trial that aligns with your needs may help provide you access to some of the best new therapies that are not readily available to the general public. Your participation can also help researchers and doctors gather data that improves the treatment landscape for other people with cancer.

Access HealthTree’s Clinical Trial Finder

Click the button below to access HealthTree’s clinical trial finder, opening the door to potential innovative treatment options.

Find Clinical Trials

Sources:

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NIH Clinical Research Trials and You
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Deciding to Join a Clinical Trial
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Who Pays for Clinical Trials?
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How Long Does Each Clinical Trial Last?
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NIH Clinical Center: Are Clinical Studies for You?
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The IRB’s Perspective: Determining Optimal Compensation for Clinical Trial Participants

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