It's time to hit pause on the PDAB
I had hoped voices like mine – a Black woman with Crohn's disease – would still have impact in the state of Maryland. Yet, there seems to be little concern that Maryland's Prescription Drug Affordability Board may reduce access to care for those already experiencing health disparities. The legislature created the board to make drugs more affordable – though to whom is still an open question.
I founded a nonprofit representing patients like me, Color of Gastrointestinal Illnesses, based on my own personal experience. I have been on 16 medications, from pills to injections to suppositories. I started having rectal bleeding at age 13, yet was not diagnosed with Crohn's disease until 2018, after a 30-year journey. And even with diagnosis, I did not get an advanced therapy prescribed until five years later.
That medication changed my life. Yet, I also recognize that I have a progressive disease and my health has been forever impacted by a delayed diagnosis and delayed prescribing of the advanced therapy I needed.
Based on my experience and so many like me, I worry the activities of the Maryland Prescription Drug Affordability Board will exacerbate existing health disparities. In this age of personalized medicine, clinicians can prescribe treatment based on evidence of clinical effectiveness based on personal characteristics. Drugs do not have the same impact on different patients, and policies should not allow physicians to be steered by payers into prescribing decisions. Insurers are not doctors.
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Patients face a flurry of threats to our access to health care in Congress right now, giving state policymakers an opening to slide past us what they might call policy tweaks or simple data collection to inform payer decisions.
Yet, any patient that has fought for coverage of their treatment knows that the policies governing payers really matters. What sounds good to save the system money does not translate into affordability and access for patients and people with disabilities. Adding to the insult, the Maryland legislature passed legislation to expand the reach of the state's Prescription Drug Affordability Board to the commercial insurance market.
We all want drugs to be accessible and affordable. Patients like me are literally fighting for their lives to achieve policies that allow them to receive care prescribed by their doctors without the barriers of utilization management, such delayed treatment due to prior authorizations, step therapy forcing patients to fail on a treatment before accessing what their doctors prescribe, and nonmedical switching at the pharmacy to a different drug.
Patients pay for the mistakes of insurers that impose their judgement about medical treatment – based largely on cost effectiveness and not clinical effectiveness – in the form of costly adverse medical events or by having to pay out-of-pocket for denied care they know they need.
When patients have raised concerns that this Board's decisions may trigger insurers to change their formularies and raise costs to patients, there has been no serious consideration of the issue other than a commitment to monitor and study it. We all know what that means – nothing.
We have also shared concerns individually and as coalitions that the board's work may conflict with the laws governing disability nondiscrimination, which bars their use of measures of cost effectiveness known to devalue people with serious, disabling and chronic conditions like mine. In response, a board member bluntly stated it was better to have more data than less and expressed intent to collect data using the quality-adjusted life year (QALY) measure to value treatments.
The board did not acknowledge the QALY is known to devalue disabled lives and is barred from use by federal law to make decisions in programs such as Medicaid. It was developed for the purpose of rationing care in other countries, which does not bode well for the disproportionate share of people of color that have disabling conditions or older adults.
The National Council on Disability is an independent federal agency advising Congress and the states on disability policy. It has consistently recommended against use of QALYs and similar measures, including by reference to other countries.
The question now is whether the board will pause its work and listen to people like me about what really drives our affordability challenges.
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