Cancer Patients Beg For Help But The Government, Drug Companies, PBM’s, and Insurance Companies Point Fingers While Patients DIE!

Only one copay program out of 7 is now open for myeloma and we are just through Feb.  This is the real domino theory.  Once one falls, it puts pressure on those that are open resulting in all of them closing in short order.  Two years ago I wrote  a blog post headlined Can You Hear It Now? The Jerry-rigged #Myeloma Safety Net Is Getting Shredded! when in March the co pay programs were running out of money.  It got progressively worse for months.  I   had once thought this issue only applied to multiple myeloma with only 30,000 new patients each year. Myeloma is considered an orphan cancer which has gotten much less  focus  than other cancers like lung or breast cancer,  which have 10 times more newly diagnosed than myeloma.   However it is plain to see it affects most of the  1,735,000 cancer patients newly diagnosed each year. PANF(Patient Assistance Network Foundation) is one of the largest of the copay programs and provides assistance for 69 different diseases, but currently 51 are closed or out of funds.  That is 74% of the total and it is just 2 months into the year.  People depend on these programs and they have proved to be unreliable.  Who would accept a 25% service level.  No one!  A short primer on how we got here!

–  Medicare provided drug coverage for Medicare patients in 2006 – Good
– But to get it signed into law Drug Companies got a guarantee the price was a nonnegotiable list price – very bad
– Whenever foreign countries or PBM’s for private insurance push net prices down (they can negotiate for lower prices) drug companies increased list price -very bad
– PBM’s wanted higher rebates from drug companies because the drug companies list prices went up –  very bad
– Medicare would not allow co pay for Medicare patients managed by the drug companies to get more generics used – misguided and deadly
– Insurance companies got lower net prices, but if the list was $100 and the net $50 they charge the copay % at list –  very shady
– Prescription prices have increased over 100%(more for cancer drugs) since 2006 while inflation was less than 25%. –  co pays went up more than 75% –  very bad
– Drug companies funded third party co pay programs like LLS, PANF, PAF, etc to help patient afford their drugs – good for patients
– In 2017 drug companies underfunded the third party co pay programs,  patients did not get drugs – patients died. 

It got better in 2018, but we are now in what I will call “The Circle Of Death” because players(PBM’s,Drug Co.,Govt, Insurance Co) game the system and patients lose.  PANF has completed a survey of patients receiving co pay for the diseases they cover.  Co Pay is critical to the health and well being of the patient. You can read it if you CLICK HERE. They note  half of all patients skip doses prior to obtaining copay assistance, and with the high cost of cancer drugs it  is most likely far greater.  During cancer treatment this will reduce efficacy.  The players are killing there customers and their cash flow!


It does seem to be a SNAFU!  We need to change SNAFU to SWAP(Situation Wonderful All Patients).  So what can be done to correct this SNAFU in the short and long term?

Short Term Solution( Fix the present system)

– Drug Companies MUST increase their contributions to the third party co pay assistance programs.  All  available myeloma  drugs will be used in the course of myeloma and also for most late stage cancers, so ALL drug companies must BUCK UP!
– The government should allow drug company directed co pay programs if there is no generic or bio-similar available.  This should achieve the same generic drug use but simplify the current convoluted process. 

Long Term Solution(The permanent fix)

– You have heard a lot of the best ideas, let Medicare Negotiate Prices, PBM’s negotiate a best price without rebates, have transparent pricing for drugs and healthcare services, provide a pricing review board for all patented drugs, have a maximum monthly total co pay limit of $100 to $150, etc.  A very comprehensive review of what needs to be accomplished in the area of drug pricing is outlined in a document titled Addressing Out Of Control Prescription Drug Prices, Federal and State Strategies. To View CLICK HERE.

Until this safety net is repaired, patients will fall through the gaping holes in the net. The system had worked for those who found these assistance programs, but now these patients are at risk as well.  I found out about the LLS program at an IMF support group meeting, and I, like most  myeloma patients, had to stumble onto the programs.  Cancer patients should be counseled on available assistance by the care team.  At least a brochure headlined “Assistance for the High Cost of Care and Drugs”.  So it is time for the talking to stop and for Government to TAKE ACTION!  I have likened this withholding of medication from the poor, disabled, and seniors as unintentional de facto GENOCIDE.  With the recent congressional meetings and the testimony of families who have lost loved ones because of this SNAFU, it can no longer be considered unintentional!

Good luck and God Bless your Cancer Journey/
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