Myeloma Co-Pay Assistance Plans Faltering is a Crisis for Some Patients

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BY GARY PETERSEN

Our healthcare system is broken and another example of this is in the fact  that not only the Patient Assistance Network (PAN) co pay program is out of funds (early 2017) for myeloma, but the Leukemia & Lymphoma Society (LLS) has been out of co-pay funds since the middle of September.  I hear the desperation on the patient blogs and I am just sickened.  Myeloma patient Michelle Ferguson-Cohen (@countedforthecure) wrote the following:

“Patients are diagnosed younger, living longer, often disabled, making less, we have no social safety net and prices are rising higher and higher. Co-pay assistance funds are drying up and we can’t count on them coming back and even the foundations focused on myeloma research do not have patient support as part of their mission. We have mortgaged our children’s futures, bankrupted our families, applied for every grant, and scrambled to jump on every clinical trial. It’s time to find a solution that works for patients.”

Patients say they cannot get their life saving drugs because they have no way of paying the co-pays, and this is mostly the seniors on Medicare who are living on a very limited income, where the co-pay for Revlimid, Pomalyst, or Ninlaro could be 25-50% of their annual income.  Many younger patients with insurance can receive co-pay help directly from the drug companies, however drug companies are forbidden from contributing to any government-run program. This also disproportionately impacts the poor and disabled (many myeloma patients are disabled). So to provide the aid to Medicare and Medicaid patients, drug companies would provide money to a 3rd party like PAN or LLS, and the foundations would offer co-pay assistance to those patients.

But now this system no longer works because the 3rd party funding has been dried up. This is not just a myeloma issue but is a problem for any chronic disease of the aged which has a high copay.  For more information on how the process works you can view my first report if you CLICK HERE.   What does this mean to any cancer patient?  It means they may have to stop treatment, which could be a death sentence or at least reduce their life expectancy.   Most new cancer drugs have patent protection, cost over $100,000 a year, and there is no generic substitute.  So why on earth would the government mandate no co-pay assistance for the very patients that need it most?

The federal government argument is outlined in a recent Medicare study:

EXECUTIVE SUMMARY: MANUFACTURER SAFEGUARDS MAY NOT PREVENT COPAYMENT COUPON USE FOR PART D DRUGS OEI-05-12-00540

WHY WE DID THIS STUDY

Pharmaceutical manufacturers offer copayment coupons to reduce or eliminate the cost of patients’ out-of-pocket copayments for specific brand-name drugs. The anti-kickback statute prohibits the knowing and willful offer or payment of remuneration to a person to induce the purchase of any item or service for which payment may be made by a Federal health care program. Manufacturers may be liable under the anti-kickback statute if they offer coupons to induce the purchase of drugs paid for by Federal health care programs, including Medicare Part D. The anti-kickback statute applies to all Federal health care programs, but this study focused on Part D. The use of coupons by Medicare beneficiaries could impose significant costs on the Part D program because many coupons encourage beneficiaries to choose more expensive brand-name drugs over less expensive alternative drugs. In two surveys by outside groups, approximately 6 percent to 7 percent of seniors surveyed reported using coupons to purchase prescription drugs.

Sounds like a good plan to get patients to use generic drugs over those that are branded but off patent.  Why should a person want Lipitor when simvastatin is just fine, or Zoloft when sertraline is a satisfactory alternative?  BUT when a drug is under patent protection, is very expensive, and there is no generic alternative, this logic doesn’t apply. The state of California understands this and has passed a state law which applies to non federal insurers (not Medicare), to require the use of generics over branded drugs if generics are available.  To view the LA Times article CLICK HERE.  Medicare co-pay laws need to exclude those drugs which are on patent, or have no generic equivalent.  Drug companies should be allowed to provide co-pay programs for these life saving drugs.   This would allow the government to obtain the saving from generics but not limit the available drugs to Medicare cancer patients.

This negligent behavior by the Social Security program can result in wrongful death of those patients on Medicare who can not continue treatment.   If a hospital withheld treatment they would be sued, and the government can be sued, but a person would have to show negligence and send the Social Security inspector general, Gale S Stone, a standard form 95, and then a wrongful death suit can be filed.  You can learn more about the process if you CLICK HERE.

The existing jerry-rigged cancer safety net is now broken and will result in patients dying too soon caused by the inability to afford life saving treatments.

Good luck and may God Bless your cancer journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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About 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

8 Comments

  1. If I understand this right, this is an issue with Medicare Part D Prescription Coverage? I have Medicare as my primary and a private policy for a secondary that includes my prescription. Because of Oral Chemotherapy Parity Laws, I have never paid for any of my oral chemo drugs since I elect plans with zero co pay for me after my deductible. Should people be avoiding prescription only plans and electing for a secondary policy with better options with OCPL? Very complicated to really discuss over a blog or comments section.

    • Your secondary policy must not be a Medicare supplemental plans or Medigap. Private policies can allow copays from the drug companies, but not if you are using Medicare or Medicaid. You must relie on third party copay plans like (PAN, LLS). Who provides you with the secondary policy and what does it cost per year. This may be an option few if anyone knows about. From my understanding, oral parity laws only apply to private insurance and not Medicare, Medicaid and Medigap policies. I hope you are right! Gary

  2. thank you so much for quoting our recent article at https://www.facebook.com/CountedForTheCure/ This quote is by a patient and community advocate Michelle Ferguson-Cohen. “Patients are diagnosed younger, living longer, often disabled, making less, we have no social safety net and prices are rising higher and higher. Co-pay assistance funds are drying up and we can’t count on them coming back and even the foundations focused on myeloma research do not have patient support as part of their mission. We have mortgaged our children’s futures, bankrupted our families, applied for every grant, and scrambled to jump on every clinical trial. It’s time to find a solution that works for patients.”

  3. Medicare
    A
    B
    D
    Mutual of Omaha supplement

    What shall I do for meds

    Multiple MYELOMA
    LARGE B LYMPHOMA
    PVNS
    72
    I NEED GUIDANCE, SERIOUSLY
    CAN’T AFFORD WHAT’S COMING DOWN THE PIKE.
    It’s worth repeating you woul be so kind just respond to this one
    Most sincerely,
    Katherine T Morgan

    • Katherine, previously you mentioned your doctor said you were smoldering myeloma. I am not a docotor, so if you question this diagnosis, you may want to get a second opinion from a myeloma specialist. Most low risk smoldering patients take a watch and wait approach, and those who are high risk to progress smoldering myeloma(HRSMM) patients can watch and wait or some clinical trials are available for the treatment of HRSMM.

      Dr. Irene Ghobrial of Dana Farber has a program where they follow smoldering patients at no cost to you, and she is an excellent myeloma specialist as well. She also has several clinical trial options for HRSMM patients.

      I have Medicare A, B, D and F. The plan F takes care of copays for medical. The Co Pay assistance programs like PAN and LLS are out of MM funds, but they should be available again, so if your doctor gives you a diagnosis of active myeloma from smoldering you will quality for an award of $10000 from LLS. The IMF can also help you find financial assistance. If you meet finatial requirements many companies will provide you free medications’. Celgene has a program to pay co pays for myeloma patients who lost their awards and will di ktgus until the end of the year.

      My advice would have been to get an award from LLS or PAN or another 3rd party co pay program and this has been how it worked for the last 8 yearsor so. Drug companies provide the co pays funds for these 3rd party programs, and for some reason their funds are not longer suffiecient to be counted on. I think they need to BUCK UP and meet the funding requirements or the CURRENT system which has failed will no longer work for the 60% or sol of myeloma patients who are on Medicare. Katherine, I wish I had better news, but the system HAS FAILED myeloma patients.

  4. You are correct. My second policy is a full policy through my wife’s employer. Between my share of premium and deductible, my annual cost has been around $10k-$11k. Since I knew my maintenance treatment schedule I pick the lowest total option knowing that I will max out my deductible in January. It has turned out the the 100% Coinsurance has been the best option. My maintenance was Velcade, but during induction and consolidation I was on Rev with no out of pocket costs. I having a second transplant (this week!) and did Kyprolis and Pomlyst. I still had no out of pocket cost for the Pom. Can other people just get a second policy instead of Part D?

  5. Steve, when I was diagnosed my wife had Blue Cross & Blue Shield as our primary insurance and having me on it cost an extra $3000per year, and because I was on dialysis I was able to be on Medicare as a secondary. With this combination, I payed very little, and my Thalamid was provided at a nominal copay. When my wife retired, Medicare care was my only insurance and I obtained supplemental part D and F. Copays for Rev, Pom, and Ninlaro would be very expensive if not for LLS should I relapse. I have called the agent who provided my Medicare supplements and will ask what a primary policy would cost if I made it primary and had Medicare as secondary? Maybe you have found a way around the copay issue? I will let people know what I find out. Best Regards/Gary

  6. Nancy Raimondi on

    I ran into this issue recently as I will be going on Medicare December 1st. My revlimid was going to cost me over $4,000 a month and there is really no way to afford that on an annual basis. I called Celgene and spoke to them about assistance. They confirmed the informant in the article that they cannot offer financial assistance due to government regulations. BUT! They have another program where they can give the drug for FREE to patients as long there no other copay assistance funds available. It’s called the Patient Assist Program and I’m so thankful that they can do this. They said because of the government regulations they can’t offer financial assistance but they can give the drug away. Not sure if other drug companies offer this but it’s worth a call. Hope this helps anyone out there needing help with getting their medication.

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