To provide an adequate evaluation of how to afford your life saving myeloma treatment, I will look at each of these two categories separately, and do the largest group first as Part A. This group may have a few additional challenges which younger patients may not have. All have some of these same challenges.
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 prevents 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 can not 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 MyelomaCrowd 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 lets just look at an example. A low risk patient (85%) of the total patients, and the standard of care is VRd induction, Stem Cell Transplant(if the patient is fit), VRd consolidation, and Rd maintenance(2years).
The first cost is for Medicare Part A, B, D & F. Cost $4,900/yr
VRd Induction Velcade 27664
Stem Cell Transplant 250000 (varies in vs. outpatient, & wildly from $120,000 to $500,000)
VRd Consolidation 48729
Revlimid Maintenance 252600
TOTAL FIRST YEAR COST $626023
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 $20000 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 can not 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? A great resource is the IMF web site. CLICK HERE! This link shows what programs are currently available from the third party providers. 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 Co Pay Assistance Program – $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 can not directly market the help to this group.