As the Trump administration and Congress wrestle with how to repeal and replace Obamacare, the conversation is dominated by abstract concepts like regulatory structures, federal subsidies and state insurance exchanges. Mentioned far less frequently are tangible ideas about how health care reform can deliver true patient benefit.
Patients all over the country are crying out for a new approach to care and new attention to their unmet needs. This may surprise the political class, but patients seem far less interested in becoming foot soldiers in the political battle over whether Obamacare is reformed, repealed or replaced than they are in participating in setting the policy direction our health policy will go. Specifically, patients are looking for an end to the muting of their voice and a full airing about what has happened to medical access and insurance design in this country.
Since Election Day, our organization brought together and directly engaged cardiovascular patients in New Orleans and psoriasis sufferers in Boston, a migraine population in Scottsdale and those being treated for blood cancers in San Diego. This is a group of men and women from diverse backgrounds, experiences and circumstances – and, naturally, from all over the country. But they share large things in common, and big parts of their stories are always the same: before patients fight their chronic disease and endure severe health challenges, they must overcome barriers to access of their medicine.
Joanne of New Orleans is a patient with chronic high cholesterol (and the cardiology challenges that go with it). She explained how her insurance company forced her to continue using a class of medications called statins against the advice of her doctor and while she suffered in pain.
“I was so, so weak … my pain was much more severe,” she said of the side effects from her statins. Eventually, after a severe administrative fight, she gained access to the right treatment.
Patients living with psoriasis know exactly what she went through.
“I suffered for years by myself,” Diane of Boston said of her experiences, which included being quarantined as a child. “They wouldn't let me go to school because of my psoriasis.”
Thank goodness society has advanced from this brutalizing treatment of psoriasis patients, and that medical innovation now provides her with treatment that works. But there’s a catch: Every 90 days, she must jump through the same insurance hoops to access her treatment. Four times a year, Diane suits up to battle her insurance company, and she’s undefeated so far. But what if she ever loses a contest?
Not every patient can fight.
Dani is from New York, living with psoriatic arthritis. She testified that she was told by her insurance company she needed to spend months “trying” an ineffective treatment. In the effort to reduce short-term costs, her health care provider enforced “step therapy” that forced her to fail first with a less costly and less effective treatment.
Numerous illnesses and infections from her already compromised immune system followed. She started missing work. Eventually, she lost her job, as did her husband, who was her primary caregiver.
“The people at my insurer had no medical degrees. Yet they had all the power to decide what medicine I had access to.”
Thankfully, the patients we gathered are finding their way with varying degrees of success across and through the maze-like barriers and dead-end turns of modern insurance design.
But what of the doubtless hundreds of thousands of patients who can’t wage this battle? Or as effectively? What part of the current Obamacare debate matters to them?
These people may be patients and their immune systems may be compromised. But what they want from the health care debate or Obamacare repeal and replacement isn’t a partisan event or a political win. They’re already fighting for their health every day. Where do they go on Capitol Hill to validate their voice of value? What agency door in Washington do they knock on to get their dignity honored?