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NW Parkinson’s Foundation ED on Budget & Healthcare Negotiations in Congress

As leader of the NW Parkinson’s Foundation, I hear every day that Americans are paying too much for prescription drugs. And they’re eager for Congress to do something about it.  

Fortunately, Washington State’s newest member of Congress, Marilyn Strickland, is listening.  In a letter to House Speaker Nancy Pelosi, Representative Strickland and nine other Democrats stressed the importance of focusing on practical measures that can garner “bipartisan, bicameral support” and actually reach President Biden’s desk. 

Strickland and her colleagues are absolutely right.  The details are everything when it comes to getting healthcare policy right. We can’t afford to lose bipartisan support for effective solutions this year. 

Many of the proposals currently being considered borrow heavily from H.R. 3, a well-intentioned but poorly written policy. H.R. 3 would lower federal healthcare spending by limiting what Medicare pays for certain medicines.  

Sounds good, doesn’t it?  It does until you look at the details. 

The core concept embedded in H.R. 3 is to tie drug reimbursements to the prices paid in other countries. In so doing, H.R. 3 links US prescription drug policy to the “Quality Adjusted Life Year” (QALY) measurements for deciding clinical reimbursement and formulary access of therapeutics.  While this aspect of the proposed policy is under-reported, it gets to the heart of what is at stake in this debate. 

A QALY measurement scores the therapeutic value of a given medicine by calculating how many healthy life years it might add to a patient’s life, devaluing treatments for those who are chronically ill or who have disabilities. In the countries that H.R. 3 would have the US emulate, insurers and governments often exclude medicines from their formularies that don’t have high QALY scores. 

So, while these other countries do have lower overall drug prices, they achieve this by restricting access. French patients have access to just 48% of new medicines introduced around the world between 2011 and 2018. Germans have access to 62%, and Canadians can fill prescriptions for just 44% of those treatments.

Since the pandemic starting in March of 2020, many of us have had our first experience of “waiting for the cure” – hoping to unlock some semblance of normalcy through access to a new therapeutic. But “waiting for the cure” is a reality faced by the Parkinson’s patients I work with every day. 

Parkinson’s patients are still using medications developed in the 1960s.  Imagine if in the Covid-era, that vaccine technology had been frozen in time for over 50 years. 

The good news for Parkinson’s patients is that new therapies using gene therapy and precision medicine are coming down the pipeline and could be the new breakthrough that patients have been waiting for.   

And while the quality-of-life impact for patients is the most important value, there are financial benefits as well.  If we could slow the progression of Parkinson’s by just 20%, per patient cost savings are estimated to be over $75,000 over the course of an individual’s lifetime.  This would yield billions of dollars in savings to the US annually – and relieve untold hardship on patients and their families.  

Approaches like H.R. 3 put this progress at risk.  Let’s not undervalue hope for new therapeutic discoveries that could improve health and well-being.  

Americans need healthcare reforms. This year, let’s focus on reforms that enjoy bipartisan support – like capping Medicare beneficiaries’ out-of-pocket expenses, or taking on the middlemen that suck tens of billions of dollars out of the healthcare system without treating a single patient or inventing a single medicine or medical device.  

We need elected leaders advocating for solutions that work. Representative Strickland’s focus on practical, bipartisan reforms shows that she has the right priorities in helping the communities she represents.  

Melissa Tribelhorn is the Executive Director of the Northwest Parkinson’s Foundation 

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