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DaveClarke
Multiple Myeloma Discussion • January 17, 2024
Navigating the High Cost of Treatment
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We are getting shafted. Big Pharma is getting bigger, some lobbyist is making a living off our suffering and our representatives are probably enjoying expensive meals at our expense. $5,000 in Australia for the same drug I pay $19,000.
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DaveClarke
Multiple Myeloma Discussion • January 17, 2024
A Good Read on Why Our Meds Cost So Much
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This is from today’s NY Times. To put it bluntly, we are getting shafted. It doesn’t have to be this way. FROM THE NY TIMES: Six Reasons Drug Prices Are So High in the U.S. Research shows prices in the United States are nearly double those in other well-off countries. Image A pharmacist crouching in front of a shelf, looking down at a box of medication. She is surrounded on three sides by shelves full of medications. A complicated system of intermediaries and a lack of legal constraints have contributed to high drug prices in the United States.Credit...Paola Chapdelaine for The New York Times Rebecca RobbinsChristina Jewett By Rebecca Robbins and Christina Jewett Jan. 17, 2024 Updated 1:53 p.m. ET Florida’s plan to save money by importing medications from Canada, authorized this month by the Food and Drug Administration, has renewed attention on the cost of prescription drugs in the United States. Research has consistently found that drug prices in America are significantly higher than those in other wealthy countries. In 2018, they were nearly double those in France and Britain, even when accounting for the discounts that can substantially reduce how much American health plans and employers pay. Have you been overcharged for prescription drugs?Share your story via our questionnaire. “The U.S. market is the bank for pharmaceutical companies,” said Ameet Sarpatwari, an expert in pharmaceutical policy at Harvard Medical School. “There’s a keen sense that the best place to try to extract profits is the U.S. because of its existing system and its dysfunction.” ADVERTISEMENT Here are six reasons drugs in the United States cost so much: 1. There is no central negotiator willing to walk away. Other wealthy countries rely on a single negotiating body — usually the government — to decide whether to accept the price a pharmaceutical company wants to charge. In the United States, negotiations with drug makers are split among tens of thousands of health plans, resulting in far less bargaining muscle for the buyers. Other nations also conduct careful analyses of how much additional benefit a new drug presents over drugs already on the market — and at what cost. If the cost is too high and the benefit too small, those countries are more willing to say no to a new drug. Health Care in the United States Obamacare: More than 20 million people have signed up for plans on the Affordable Care Act’s marketplaces during the annual open enrollment period, far surpassing last year’s record of more than 16 million enrollments, the Biden administration said. Medical Errors: A major study showed how the rate of serious medical complications increased in hospitals after they were purchased by private equity investment firms. Operating Profits: A New York Times series looked at the proliferation of lucrative but precarious medical procedures, including risky artery procedures, complex hernia repair, a bustling bariatric program and “tongue-tie” surgery for babies. “Our lack of consolidation in negotiating is a key reason that we pay more than other countries — but also this unwillingness to negotiate as hard,” said Stacie Dusetzina, a health policy expert at Vanderbilt University School of Medicine. The Inflation Reduction Act, enacted in 2022, authorized Medicare to negotiate directly with drug companies over the prices of a small number of drugs years after they entered the American market. Health policy analysts say that is a start, but much broader negotiating authority is needed to make a dent in drug prices overall. ADVERTISEMENT Pharmaceutical companies argue that the higher prices come with added benefit: Industry-funded analyses have found that patients in the United States get medicines faster, and with fewer insurance restrictions, than those in other countries. 2. There are no price controls. Some countries set limits on how much they will pay for medicines. France, for example, caps the growth of drug companies’ sales: If sales exceed that threshold, the government gets a rebate. Drug companies in the United States have avoided legal restraints on prices for patients covered by commercial insurance and on introductory sticker prices when drugs first enter the market. “Drugs are so expensive in the U.S. because we let them be,” said Michelle Mello, a Stanford law and health policy professor. “We designed a system in terms of drug costs that is all engines, no brakes.” ADVERTISEMENT 3. The system creates perverse incentives. Drug companies are not the only ones making money from high drug costs. Doctors, hospitals and an array of intermediaries also see higher revenue when costs soar. One case in point: Under Medicare policies for some drugs, doctors pay upfront for drugs that they administer to patients intravenously in their offices, such as chemotherapy. To recoup their costs, they send a bill to Medicare for both the cost of the drug and a percentage of that cost, set by Medicare, to cover their overhead. That billing system creates an incentive for a doctor to choose a higher-priced drug. For example, a Medicare rate of 6 percent on a $10,000 drug would pay $600 — a lot more than the $6 fee paid for infusing a $100 medication. Experts also see misaligned incentives stemming from pharmacy benefit managers, or P.B.M.s, big businesses that negotiate with manufacturers on behalf of the employers and health plans that pay most of the bills for prescription drugs. P.B.M.s make more money in fees from manufacturers when the sticker price of a drug is higher. They sometimes require patients to take a drug with a higher sticker price even when a cheaper alternative is available. ADVERTISEMENT 4. The system is fragmented and complicated. Drug industry executives often complain that they are unfairly blamed for high prices while other parties, including P.B.M.s and insurers, are profiting from a growing share of drug spending and saddling patients with high out-of-pocket costs. “The United States is the only country that allows middlemen, such as P.B.M.s, to profiteer on medicines unchecked,” said Alex Schriver, an official at Pharmaceutical Research and Manufacturers of America, or PhRMA, the drug industry’s main lobbying group. Manufacturers retain only half the money that health care payers initially spend on prescription drugs before discounts are applied, according to a 2022 study funded by PhRMA. The system is so confusing that doctors and patients trying to decide between seemingly comparable drugs have no easy way to determine what their actual cost will be at the pharmacy counter. Even researchers have trouble parsing the system — in particular, the complex deals made between drug makers, intermediaries and insurers — as they try to pinpoint problems and come up with solutions. 5. Patent gaming keeps prices high longer. Around the world, countries issue patents to drug companies that grant them temporary monopolies during which lower-priced generic competitors can’t enter the market. But in the United States, drug companies have been especially successful in finding ways to prolong that monopoly period, through tactics like piling up patents to protect inventions that are only tangentially related to the drug in question. For example, the drug company AbbVie delayed competition for its blockbuster anti-inflammatory drug Humira for more than four years longer in the United States than in Europe. Patents were a key factor: A number of AbbVie’s patent applications were refused by Europe’s patent examiners or revoked after being challenged, according to an analysis by the Initiative for Medicines, Access and Knowledge, a nonprofit that tracks drug patents. AbbVie declined to comment for this article. 6. Drug prices are what the market will bear. Drug industry executives often say their prices reflect the value their products provide to society. For example, a one-time $3 million cure may be a bargain if it ends up averting $10 million in hospital bills and lost wages. But a comparison with other valuable resources shows how that model could send prices spiraling out of control. “If we allowed water utilities to charge us the full value of water in our lives, society would very quickly break down,” said Christopher Morten, an expert in pharmaceutical law at Columbia University. Drug companies also say the prices of medications reflect the huge, rising costs of running clinical trials and the need to recoup expensive investments in failed drugs. But academics have found no relationship between how much drug companies spend on research and how much they charge. The reality, experts say, is that companies set their prices as high as the market will bear.
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IceSk8Girl
Multiple Myeloma Discussion • January 17, 2024
Experiencing Patchy Hair Regrowth After ASCT?
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I had Cytoxin chemo conditioning twice to get enough stem cells for ASCT, then had Busulfan and Melfalan conditioning during the ASCT. My hair took 6 months to even start to grow back, and then it was in patches. It is now 1 1/2 years after ASCT and I still have these nearly bald patches on my head. Has anybody else had this experience?
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HealthTree User • Admin
Multiple Myeloma Discussion • January 17, 2024
Managing MM With Dermatomyositis?
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I am in contact with a patient who was just diagnosed with Dermatomyocytis (the kind that causes interstitial lung disease/fibrosis that is extremely hard to treat and with a poor prognosis. The treatment for that disease is harmful to Myeloma patients. Likewise, treating myeloma is harmful for Dermatomyositis (ILD) patients. The combination is rare. Any suggestions? She has an appointment with Johns Hopkins on January 22nd, which was made prior to receiving this news.
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purplelioness
Multiple Myeloma Discussion • January 16, 2024
Starting KPD + Dara: Experiences & Tips?
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Hello, is anyone here taken , KPD& Dara infusion ( Kyprolis, Polmyst, Dex plus a Dara infusion? I am going into my 1st week. I have triple hit multiple myeloma as well as lambda light chain. I was on RVD Maintenance after my SCT in June2023. Oddly enough, I developed an allergic reaction to Revlimid and was not able to stand it. Please share experience, your thoughts and suggestions about this combined therapy program.
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purplelioness
Multiple Myeloma Discussion • January 16, 2024
Starting KPD + Dara: Experiences & Tips?
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Hello, is anyone here taken , KPD& Dara infusion ( Kyprolis, Polmyst, Dex plus a Dara infusion? I am going into my 1st week. I have triple hit multiple myeloma as well as lambda light chain. I was on RVD Maintenance after my SCT in June2023. Oddly enough, I developed an allergic reaction to Revlimid and was not able to stand it. Please share experience, your thoughts and suggestions about this combined therapy program.
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Rick St.Aug
Multiple Myeloma Discussion • January 15, 2024
Stopping Revlimid Maintenance: Experiences?
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I did not have ASCT but have been on 10mg Rev maintenance since the end of my induction treatment 3.5 years ago. IGg Kappa, my M spike has stayed between .1 and .4. Wondering if anyone has stopped the maintenance Rev and what results you had.
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CATX72Bslp
Multiple Myeloma Discussion • January 13, 2024
Managing Elderspeak: How Do You Respond?
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A couple of healthcare professionals speak to me in a sing-song tone of voice that sounds condescending to me. They might use the words, “honey”, “sweetheart”, etc. It sounds like they are speaking to a young child. I have learned from online research that this is called “elderspeak”. Elderspeak is very annoying to me. I have found lots of articles online to educate nurses about elderspeak. Apparently, some are unaware of this behavior until they hear a recording of their voice. I have not found any articles online that give suggestions about how a patient might respond to elderspeak when annoyed or angered by it. Please let me know how to respond to elderspeak. To Healthtree University: Could you ask someone to write an article for your website about how patients might respond to elderspeak? Your article about “Assertive vs Aggressive Patients” was very helpful to me. We discussed that article in our myeloma group. And, your videos are fabulous! Thank you!
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kenlevy
Multiple Myeloma Discussion • January 12, 2024
Financial Support: LLS $100 Patient Aid
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LLS has available the $100 Patient Aid Program. There are no income requirements and to be eligible: Reside in the U.S. or U.S. territories at the time of their application. Have a confirmed diagnosis of blood cancer, be in active treatment, scheduled to begin treatment or in follow up care. Have NOT received a Patient Aid Program award in the past. To apply see: https://lls.org/support-resources/financial-support/patient-aid-program
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Stuart
Multiple Myeloma Discussion • January 12, 2024
Managing Teclistamab Skin Rash - Any Tips?
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Hi everyone - I am a 62 year old South African diagnosed 10 years ago this month and I am still strong. I am on my third dose of Teclistamab. I had pretty severe Cytocline Release fevers on first dose but all good now. I have large skin rash/inflammation areas on my tummy from the sub-cut injections which seem to stay for around three weeks. I'm wondering how common this is and if there are any remedies to reduce the skin sensitivity. Thanks Stuart from Cape Town, SA
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Qunbin
Multiple Myeloma Discussion • January 11, 2024
Myeloma Co-Pay Assistance Is Available
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The Myeloma Co-Pay fund reopened today at 1pm ET. In addition to the follow funds still remaining open MDS- Myelodysplastic syndromes (MDS), Chronic myelomonocytic leukemia (CMML), Juvenile myelomonocytic leukemia (JMML) (diagnosis formerly known as chronic myelomonocytic leukemia of infancy [CMML]),MDS/MDP overlap syndrome AML - Acute myeloid leukemia (AML), Acute promyelocytic leukemia (APL), Erdheim Chester Disease, Mast cell leukemia, Mastocytosis CLL - Chronic lymphocytic leukemia (CLL/SLL), B-cell prolymphocytic leukemia (B-PLL), Hairy cell leukemia, Large granular lymphocytic leukemia Lymphoma - Hodgkin lymphoma (HL), Non-Hodgkin lymphoma (NHL), T-cell large granular lymphocytic leukemia (LGL), Lymphomatoid papulosis, Post-transplant lymphoproliferative disorder (PTLD) As always, the funds are highly applied to; so please share this notification among your colleagues. To learn more about these funds, visit www.LLS.org/financial-support.