Advocacy Wins for the Hydrocephalus Community

While impeachment still occupies the headlines, it’s not the only thing that happened this past December in Washington, DC. Amidst all the end-of-year chaos, Congress handed the hydrocephalus community a number of big wins!

HA Wins

Patient-Centered Outcomes Research Institute (PCORI) Funding
PCORI is an independent organization that provides research grants to study different medications and treatments. It was created as part of the Affordable Care Act (or “Obamacare”) and receives funding from the federal government. Those funds were due to run out this year. In an end-of-year budget agreement, a coalition of patient and caregiver organizations, including HA, succeeded in extending that funding for another ten years.

Why does it matter to us? PCORI research helps patients and their caregivers have the information they need to make informed decisions around their care and know they are getting the best recommendations based on sound studies. Under one grant, for example, Dr. Whitehead at Texas Children’s Hospital is studying shunt implant procedures. This information will be useful to patients and caregivers as they consider treatment options with their doctor. This Congressional action opens up the possibility for more hydrocephalus-related grants in the future.
Rating: A WIN!

Medical Device Excise Tax 
The Affordable Care Act included a 2.3% medical device excise tax to help fund the insurance marketplace. HA joined Research!America and other coalitions in opposing the tax, due to its potential impact on devices like shunts. The same end-of-year budget agreement that fixed PCORI also repealed this tax.
Rating: A WIN!

Congressionally Directed Medical Research Program (CDMRP)
The CDMRP under the Department of Defense funds research on a variety of health conditions, including hydrocephalus, that impact members of the military. These funds must be approved every year. In the past, some legislators have proposed eliminating or severely restricting the program. HA joined a coalition of groups focused on preserving funding for this program–and we succeeded! A bill to fund CDMRP passed in the last week of the Congressional session.
Rating: A WIN!

Issues We’re Still Planning to Win On:

Drug Pricing
Both the House and Senate continue to work toward legislation to reduce drug prices. The House has passed a bill that would allow Medicare to negotiate the price of at least 50 medicines per year. It would also restrict price increases in workplace plans. Meanwhile, the Senate is looking at a bi-partisan proposal that would revamp Medicare and Medicaid’s approach to drug pricing as well as require more transparency from Pharmaceutical Benefit Managers.

So what does that mean for my pocketbook? Although this issue hasn’t been resolved yet, the fact that leadership in both the House and Senate have taken action means that this remains a top priority for members of Congress.

Surprise Billing
As with drug pricing, both the House and Senate have been considering proposals to address the problem of “surprise billing” (i.e., when a patient receives an unexpected bill because a procedure or treatment was not covered by their insurance). Options have ranged from setting a benchmark rate for out-of-network services, to establishing a third-party arbitration system to resolve disputes. Both options have bi-partisan support, although at the point a “benchmark” rate approach has more support from the lead Committees.

Long Story Short:  everyone wants to do something about surprise billing, but there’s no agreement yet on the best approach. Look for this to be a hot topic of debate next year.

Stay tuned for more hydrocephalus-related news out of Washington, DC in 2020!