Opinion: Drug-coverage cuts endanger sons’ lives
From the story:
Pattie Curran is a North Carolina mother whose two sons receive treatment at Cincinnati Children’s Hospital Medical Center’s bone marrow clinic.
As the mother of two chronically ill children, our family has long faced high health care costs, and it’s getting worse, thanks to companies called pharmacy benefit managers.
My sons have a rare bone marrow failure condition called Shwachman-Diamond syndrome and have secondary mitochondrial disease. They require a broad range of medications to treat their life-threatening conditions, including compounded medications which are typically prescribed to patients who can’t metabolize or tolerate commercial drugs.
In July, I was notified that some of our sons’ most important compounded medications are no longer being covered by Express Scripts. This is because Express Scripts – the nation’s largest pharmacy benefit manager, with 90 million Americans enrolled, according to the Associated Press –announced sweeping coverage cuts this summer to 1,000 ingredients used to make compounded medicines. The cuts are coming at the worst time for my sons, who, despite weekly trips to the ER and specialists, are trying to live normal lives filled with sports and after-school activities.
Today we find ourselves deeply in debt and drowning in the paperwork of what has become a full-time fight to restore coverage of essential, life-saving treatments for our sons. This year alone, we have been billed tens of thousands of dollars in out-of-pocket health care costs.
While some of the ingredients found in my sons’ compounded medications come in commercial form, there’s no FDA-approved medication or supplement on the market to treat mitochondrial disease. This alarms not only my family, but also my sons’ specialist. The specialist has written a letter to inform our insurance company that if my sons are not able to continue their compounded medications due to the lack of coverage, it could lead to neurodegenerative symptoms and potentially result in death.
As a mother this is devastating. I feel like I am at the mercy of pharmacy benefits managers and insurance companies.
Patients and Physicians for Rx Access has formed to protect patient access to compounded medications. The coalition is made up of patients, advocacy groups, pharmacists, physicians, pharmacies and health care organizations focused on raising awareness about this crucial issue. By sharing information with patients and the doctors who are impacted by this unnecessary loss in benefits, the group hopes to fight these cuts.
Filed under: General Problems
I remember sitting in when our state Medicaid was developing its Preferred Drug list…they met in 2 portions…one was public where drug companies would make their case for being put on the list…the 2nd meeting was behind closed doors where pricing was discussed…ie rebates back to the state/price breaks ( I wont say the ‘K’ word but gee that sure what it sounds like doesnt it??) And when this whole healthcare fiasco was being rammed down Americans throats, Big Pharma made those same back door deals to get their drugs on the lists as we are seeing now….So IMHO….the PBMs have decided they are not or will not see those “K” words from compunded medications because they are not commercially made so why cover them….patients be damned because in the end Obamacare may have gotten rid of the pre exisiting conditons clauses but …by keeping the choices so tightly limited to ‘keep costs down’ (lie) and too many hoops for people to jump through just to find doctors to take care of that pre existing condition or medications to treat it including compounded ones, it has IMHO instituted a form of rationing. People will try to fight it, but will tire of it and give up which is what insurance/PBMs want done and in the end the insurances and PBMs will win on their bottom lines as they wanted while patients like the boys in the story will have their conditions worsen and they will proabaly die an earlier age than they should have.