Comment: In cutting health care costs don’t limit patient care

Build Back Better’s provisions to cut drug costs could hurt those dealing with rare diseases.

By Carolina Sommer / For The Herald

As the mother of a child with an FGFR syndrome, which causes anomalies in the skull, face and joints, I’ve seen firsthand the impacts of America’s rising health care costs. Increased health care expenses are an everyday reality that drastically affects quality of life for my own child and many of the children that I advocate for who live with rare diseases, chronic illness and disabilities.

Like many Americans, I’m thrilled that Congress has made the rising cost of health care part of the national conversation with provisions in the Build Back Better Act. And thankfully, here in Washington, we have Sen. Patty Murray on our side advocating for patients. She has a longstanding commitment to Washingtonians’ health care interests and has fought for years to improve access to care and lower costs.

But as Congress considers new policies to reduce health care costs, it’s important to remember that the devil is in the details. Recent attempts to lower costs will inadvertently restrict access to care for patients with rare diseases, chronic illnesses and disabilities. It could also cause millions of Americans to lose access to innovative treatments that improve quality of life.

That’s because the Build Back Better Act’s health care provision focuses primarily on drug pricing without looking at the factors that make up the majority of American’s health care costs, such as rapidly rising insurance premiums. That’s a problem for many families across the U.S. for whom most health care spending doesn’t come from prescription costs.

The U.S. Government Accountability office estimates that only about 12 percent of personal health care spending goes to prescription drugs. At the same time, it’s predicted that employer sponsored health care plans will see costs increase 5 percent in 2022 – and that follows a 5.2 percent increase in 2021. Employers are partially absorbing the costs for now due to the tight labor market, but that may not last and health plan premiums will likely dramatically increase in the future.

However, the issues with Build Back Better don’t just lie in what’s left out; the act introduces devastating payment and access issues that would disproportionately impact patients and families with rare diseases, such as rare cancers.

A recent independent study found that under Build Back Better, Medicare payments to independent cancer care providers will be cut by 42.9 percent. That would include payments for medical oncology, hematology and rheumatology treatments.

Providers would be forced to either drastically raise prices or close their practices. Rare cancer patients would need to rely on hospitals for treatment, which puts them in an extremely difficult financial position: A University of California-Berkeley study found that out-of-pocket costs at hospitals are much higher and outpatient prices are typically double those paid in independent providers’ offices.

The bill also introduces unfair provisions that could tie the amount insurers pay for treatments to “quality adjusted life-years” or QALYs. QALY is a framework that scores the value of a treatment or medicine by calculating how many healthy life years it may add to a patient’s life.

While that may initially sound like a good method of evaluating effectiveness, in reality it devalues treatments for those with rare diseases or who face long-term illness. These types of formulary restrictions will diminish access to critical medicines for patients who rely on them.

Children with rare diseases, such as my own, will potentially face a lifetime of inability to access the treatments they need. The U.S. has already seen the rate of children who are underinsured surge 30 percent in recent years, and these changes will only make their coverage worse. Are potential drug price decreases worth devaluing care for the most in-need members of our society?

Though well intentioned, the Build Back Better Act’s health care provisions are not a solution for families such as mine and many of the children with rare diseases I meet and advocate for every day. Build Back Better doesn’t address the multitude of factors increasing what Americans pay for their health care, and it stands to reduce care access for many in our country.

Every family in America needs lower health care prices, but it can’t come at the expense of patients with rare diseases and other medical conditions. Our congressional leaders must make sure that the Build Back Better Act doesn’t disproportionately affect patients and families who need care the most.

Carolina Sommer is mother of a child with Pfeiffer Syndrome and founder of Born a Hero Research Foundation. An advocate for rare disease patients in Washington state, she lives in the Seattle area.

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