Commentary: Drug price reforms can’t come at cost to access

By Melissa Tribelhorn / For The Herald

As the health care debate picks up in Congress, efforts must be measured against their ability to both reduce out-of-pocket costs while promoting access to new, breakthrough therapies. The recently introduced House Resolution 3 (H.R. 3) aspires to achieve these goals, but comes up short in several important ways.

I work with Parkinson’s patients on a daily basis, and their chief concern is access to the right doctors, medications and other treatments. Because Parkinson’s is a complex, degenerative neurological disorder, no two patients experience the same onset of symptoms, at the same speed, or over the same duration of time. Parkinson’s patients, for the most part, have been taking the same set of medications, with some variations, since the late-1960s. Our community is one of many in the country that is still waiting for a cure.

As written, H.R. 3 runs the risk of extending that wait even longer.

The bill contains a provision similar to one proposed by the Trump administration that would link drugs available through Medicare to a reference price based on prices in foreign countries. In addressing concerns we may have about our own system, we should not import the problems of others.

Access is the main concern. U.S. patients gain access to nearly 90 percent of new drugs as soon as they are available. That compares to 64 percent in Germany, 59 percent in the United Kingdom, 51 percent in Japan, 50 percent in France, 46 percent in Canada and 36 percent in Australia. There are several promising emerging therapies for Parkinson’s in the research pipeline, and all Americans should have access to those therapies when they come on the market.

As we consider changes to the health care system, we need to think about the implications for patients with serious or complex illnesses. We should not create a system where a doctor might not be able to prescribe the medicine her patient needs to live a higher quality, more productive life.

There is a link between access and patient outcomes. H.R. 3 seems focused on making a dent in the U.S. federal deficit, but questions remain on whether it would actually deliver meaningful savings to patients at the pharmacy counter.

H.R. 3 makes progress by capping out-of-pocket costs at $2,000 annually for those on Medicare; with pharmaceutical companies, the government and insurance companies pitching in to cover costs above that. Capping out-of-pocket costs is paramount, and this could be improved by spreading out-of-pocket liability over the course of the whole year rather than requiring patients cover the cost all up front.

Beneficiaries deserve to see more money in their pockets and lower prices at the pharmacy. People with Parkinson’s would benefit from focusing on changes that prioritize patient-driven care and affordability, such as requiring rebates and discounts on drugs to be shared with patients at the pharmacy counter, increasing transparency on costs for patients, and promoting value-based payments.

There is no doubt we can do more to serve the needs of all patients moving forward. Lawmakers should be applauded for diving into what is a difficult set of issues.

But to be truly successful, we must protect those with the most urgent needs first, while protecting the innovation ecosystem that makes our system unique and effective. Parkinson’s patients are just one of many communities in the United States still waiting for a cure. Let’s not compromise tomorrow’s breakthroughs while we grapple with today’s challenges.

Melissa Tribelhorn is the executive director of the Northwest Parkinson’s Foundation.