I have heard from many patients in the United States and they frequently voice fear and concern on how they will afford their medications, doctor and hospital bills. This should not happen in the richest county in the world, and I believe most people can afford treatment if they just knew how to work our convoluted health care system.
The top 1% earn $422,000 per year and I would assume have great insurance and can cover their co-pays and deductibles. However, two classes of patients do have concerns of how to afford life-saving treatment. The first is the 36%, or those who either have no insurance or private insurance (average $58,000 yearly household income), and the second would be the 63%, or those 65 years or older who are on Medicare (married $48,000, single $19,000). To provide an adequate evaluation of how to afford your life-saving myeloma treatment, here are some of the issues we all face:
1) I have found 85% of patients go to a community oncologist. They usually have a small staff and do not provide adequate financial counseling.
2) Many want to know what insurance you have, or some do not accept Medicare. They want to know they will get paid!
3) Smaller offices do not see many myeloma patients and they may not know what financial help is available by the drug companies or by LLS, PAN, and other third party co-pay assistance programs.
4) Patients do not know they can apply to more than one program.
5) Drug companies can not reach out to patients using their drugs and inform them of the help available because federal rules prevent it.
6) If you are on Medicare, federal law prevent any co-pay assistance directly from drug companies. So to provide assistance, drug companies and others provide funds to third party providers like LLS (Leukemia, Lymphoma Society) to provide funds for co pay assistance.
7) So if your doctor is too busy and does not have the staff to cover it, and drug companies cannot tell you third party providers have these funds available to you, how do you find out about them? YOU MUST FIND OUT YOURSELF! You go to the LLS site, the IMF (International Myeloma Foundation) site, find out from other patients, or at local LLS, IMF or Myeloma Crowd support group meeting.
You need to know the doctors, drug companies, and third party co pay assistance programs really do want you to get financial help to take your medicines. If you live they have a patient longer, they make more money and you live longer. WIN, WIN! That is why they provide the financial assistance.
So let's just look at an example. For a standard-risk patient (85% of all myeloma patients), the standard of care is Velcade/Revlimid/Dex induction, Stem Cell Transplant (if the patient is fit), Velcade/Rev/dex consolidation, and Rev/dex maintenance (2 years).
The first cost is for Medicare Part A, B, D & F. $4,900/yr
VRd Induction Velcade 27,664
Stem Cell Transplant 250,000 (varies wildly from $120,000 to $500,000)
VRd Consolidation 48,729
Revlimid Maintenance 252,600
TOTAL FIRST YEAR COST $626,023
My best guess is that even with all of the Medicare coverage for A, B, D, & F, the plan costs, co-pays and deductibles will run in the $20,000 to $30,000 range. The drug companies know someone making just $48,000 per year can not suddenly spend half of their income on medical bills, so they develop these programs so you can buy their drugs and services. It is part of their economic model. They will pay $20,000 or $30,000 of your co pay costs so they can receive more of the $626,023 for the first year of treatment. They want you to find out about these funds and want you to use them, they just cannot by federal law play any part in promoting or informing the patient of their existence.
IT IS NUTS, but was put in place so Medicare patients would buy generic drugs instead of getting an incentive from drug companies to buy their branded drug. For example generic sertraline vs. Zoloft or simvastatin vs. Lipitor. However, most cancer drugs do not have a generic alternative and any drug that is covered by a patent MUST BE exempt from this federal law.
So how do people on Medicare find out about these available funds which can save their lives? Unfortunately it will continue to be the current ineffective way, like this blog post and word of mouth. I found out through an IMF support group meeting. I wish drug companies would promote these sources of funds though third part national advertising. People deserve to KNOW!
So how do you find where you can get these funds?
You can apply for more than one, and you will need to do so to cover the first year costs. For example you can obtain the following funds:
Leukemia, Lymphoma, and Myeloma Society - $11000 CLICK HERE for the link
Patient Assistance Network - $15600 CLICK HERE for the link
Patient Advocate Foundation - $10000 CLICK HERE for the link
Should you get approved for each of these awards, you can easily cover your insurance, co pay, and deductible costs. The current system is a mess and complicated by government limits on medicare co pay, limits on Medicare negotiating drug prices, and PBM's (physicians benefit mangers) who charge co pays based on list price not net prices.
Until our convoluted system is rationalized, Medicare myeloma patients must find the funding this way to ensure they stay with the living. Part B of this blog post will cover the 36% patients without insurance or private insurance, and will in the next few weeks. A big plus for this group is drug companies are not prevented from providing direct assistance, but still cannot directly market the help to this group.
about the author
Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1