They Know Not What They Do!  Is This Cancer Patients 9/11?


The system is broken, and another example of this is in the fact  that not only the PAN co pay program is out of funds (early 2017)for myeloma, but the 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.  Patient advocate Michelle Ferguson-Cohen 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 Revlamid, Pomalyst, or Ninlaro could be 25 to 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 providing this 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 they would offer co pay assistance to those patients.

But now this system no longer works because the 3rd party funding has been dried up, PAN in the 1st quarter of 2017 and LLS in September.  This however is not just a Myeloma Issue but 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, and 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 government argument is outlined in a recent Medicare 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 is just not at all applicable.   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 generic 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 copay 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.  Effectively this is government forced hospice care, as withholding life extending care can be a part of the hospice process.

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: