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.
By customizing prescriptions to the individual’s needs, doctors help patients like my sons, as well as patients dealing with the effects of cancer, diabetes and other serious conditions. Compounded drugs are also used by people with hormonal imbalances, chronic pain and allergies to certain ingredients in mass-produced medicines.
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.
Hundreds of thousands – perhaps millions – of Americans who use compounded medications face a loss or reduction in coverage as pharmacy benefit managers and insurance companies eliminate or severely limit coverage.
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.
Compounded medications have changed my sons’ lives, and it saddens me to know they and so many others face this new obstacle. Those most affected need to push back now and join the fight for compounded medication coverage to make an impact. Please visit www.saverxaccess.org to learn more.
