First the good news, the LLS CoPay program has reopened. Dana Holmes has posted on her Smoldering Myeloma site the following:
A lot of people have worked to make this happen. Dana Holmes, IMF, LLS, MMRF, Myeloma Crowd, Doctors, Patient Advocates, Patients, our pharmaceutical partners. Thank You to ALL, ours lives depend on it!
There are limited funds, and all those who have been previously approved must sign up again. Your prior myeloma approvals are no longer in force, and you must call to reapply for the program. This time it has changed in a few important ways. The first of which is if you apply and are approved the money will be guaranteed for one year from approval. Also to keep your approval active you must enter expenses at least once every 3 months. Funds are limited, so to obtain funding it is first come first served. The copay amount has been reduced from $10,000 to a maximum of $7500. Once the funds are allocated no more applications will be accepted until new funds become available. You can learn more about the program if you CLICK HERE.
So where is the BIG BUTT? As mentioned before all people except seniors have or can buy private insurance and the federal government can not mandate a no copay policy. Drug companies can provide copay assistance DIRECTLY to the 85% of Americans that fall into this category. However for the 15% of the population who are seniors, drug companies are forbidden by law from providing direct copay assistance. To me this sounds like an issue of Federally mandated AGE DISCRIMINATION. And sadly this is a crisis for seniors, but for African American Seniors with myeloma it is 2.5 times the crisis. African Americans are 2.5 times more likely to get myeloma than the general population. As stated previously, the Federal Government made this provision to promote the use of generics for Medicare patients, but did not exclude single source or patented drugs from this program. For more information on this Medicare Faux Pas or BLUNDER CLICK HERE.
So the lack of copay assistance for Medicare patients is a key part of the BIG BUTT. If drug companies could not pay the copays directly, then maybe they can give third parties like LLS, PAN, etc, money, and these non drug company third parties could then provide the copay to Medicare patients and thus solve the Federal COPAY BLUNDER! This was great for the medicare patients who could now afford their life saving drugs. Myeloma patients could have copays of $10000 to $30000 per year or more than their Social Security Checks. The equation is NO COPAY = NO DRUGS = SENIOR GENOCIDE!
As one fine Mayo Doctor once said, this makes sense to the drug companies because they can spend $10000 to $20000 in co-pays and sell their drugs for $120,000 to $300,000. Who wouldn't spend $10 to make $120. Something obviously has gone very wrong because the 3rd party Well went dry for myeloma in March for PAN and in September for LLS. It did not however go dry for lymphoma and leukemia. So why myeloma? Some reasons could include the myeloma drug companies are having trouble with basic math, the lymphoma and leukemia guys are much better at math than the myeloma drug companies, there is another agenda in play???(The Conspiracy Theory), or drug companies just did not have a system in place to know how much funding was going out vs. what was coming in. Seems like the most basic of math problems. Why it takes over 6 months to correct is unconscionable and beyond comprehension!
So for all of us with myeloma, we hope they solve the last BIG BUTT, and that is to make sure the well is NEVER AGAIN EMPTY, or allow drug companies to provide copay assistance for single source and patented drugs. If we interrupt our treatment we are far more likely to die, and 30% of us already die in the first year.
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