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The Co-Chairs of the Hydrocephalus Caucus Introduce Hydrocephalus Awareness Month House Resolution
The Co-Chairs of the Hydrocephalus Caucus Introduce Hydrocephalus Awareness Month House Resolution Chris Smith (NJ-04) and Lloyd Doggett (TX-37), co-chairs of the Hydrocephalus Caucus, introduced H. Res 1479 – Expressing support for the goals and ideas of “National Hydrocephalus Awareness Month” and “World Hydrocephalus Day”. The resolution brings awareness to the over 1 million individuals with hydrocephalus in the United States and highlights the importance of September for hydrocephalus awareness.
Although there have already been a few members of the Hydrocephalus Caucus who have cosponsored the legislation, we need to get as many congresspeople to show solidarity to our community! To achieve this, we need YOUR help to urge your members of Congress to support and cosponsor the legislation. Below is a call-alert that provides the details of your member of Congress’ office. A script is provided to help you request your Representative to cosponsor the House Resolution.
Caucus Members Spread Awareness on Social Media!
The Hydrocephalus Association has been partnering with members of the Hydrocephalus Caucus to promote our community through social media. Multiple members have posted to show solidarity with the patients in their state who have hydrocephalus.
Congressman Josh Gottheimer’s Post
Congresswoman Chavez-DeRemer’s Post
Congresswoman Abigail Spanberger’s Post
Congressman Seth Magaziner’s Post
Congresswoman Yadira Caraveo’s Post
Congressman Jerry Nadler’s Post
The Congressional Hydrocephalus Caucus Reaches 37 Members!
Two new members of the U.S House of Representatives joined the Congressional Pediatric and Adult Hydrocephalus Caucus in September. Congressman Andre Carson (IN-07) is the first member from Indiana to join the Hydrocephalus Caucus. His membership underscores the robust hydrocephalus research network present in the state. Among the research in the state is the IU School of Science’s Hydrocephalus Research Center, which is located directly in Representative’s Carson district.
Congressman Paul Tonko (NY-20) becomes the 3rd member from New York to join the Caucus. As a veteran in the U.S. In The House of Representatives, he has been a staunch champion promoting important issues affecting the aging community. His leadership will be key for the Caucus’s emphasis in promoting issues important to the approximately 800,000 Americans living with normal pressure hydrocephalus (NPH).
Support for Telehealth Flexibility Extension
The Hydrocephalus Association joined others in the chronic condition stakeholder community to endorse a congressional letter circulated by the Alliance for Connect Care urging Congress and the White House to extend federal telehealth flexibilities.
In December, telehealth provisions established through the Covid-19 Public Health Emergency will expire meaning that Drug Enforcement Agency (DEA)-registered practitioners will not be able to issue prescriptions for certain controlled substances to patients via telemedicine without an in-person medical evaluation. The expiration of the rule will present major challenges for hydrocephalus patients who face geographic barriers to their medical providers.
To view the letter, click HERE.
HA Endorses Letter Urging Congress to Hold PBMs Accountable
The Hydrocephalus Association recently joined others in the chronic condition space by endorsing a letter headed by the National Multiple Sclerosis Society. The letter, directed at leaders of the relevant U.S. House and Senate healthcare committees, urges Congress to pass important legislation centering on business tactics regularly used by Pharmacy Benefit Managers (PBMs). In the drug supply chain, PBMs act as middlemen who negotiate prices on behalf of insurance plans with drug makers. While PBMs argue their role provides necessary benefits that decrease drug prices for insurance plans and beneficiaries, many reports show they engage in negative practices resulting in minuscule trickle down effects and higher-priced medications for patients.
One of the many concerns addressed in the letter focuses on PBMs incentives during the drug supply chain negotiation process. During plan formulary negotiations, the PBM companies receive rebates (or payments) from drug manufacturers as they place certain medications on an insurance plan’s formulary. Higher priced medications result in higher rebate payments for PBMs. Therefore, the middlemen are incentivized to land on higher-priced name brand drugs instead of cheaper generic or biosimilar drugs to increase profits. Patients suffer while paying higher prices for must-needed drugs provided by their insurance plan.
Among other concerns in the letter is utilization management practices such as step therapy. PBMs have a strong control of patient access to medication. Step therapy is regularly used to force beneficiaries to “fail” first on cheaper, alternative medications, which causes timely delays to access for drugs prescribed to patients. The letter references the Safe Step Act (S. 662/H.R. 2630), which would establish an exemption process for the practice.
HA is a major supporter of reform for utilization management and PBM practices. The Safe Step Act and other legislation addressing PBMs will likely be considered for passage before the end of the 118th Congress in December.
The Accelerating Kids Access to Care Act Passes the House!
The House of Representatives passed H.R. 4758 – the Accelerating Kids Access to Care Act with overwhelming bipartisan support. The legislation, which has been a major priority of the Hydrocephalus Association, would require state Medicaid programs to establish a process for out-of-state providers to treat children without additional enrollment barriers. Lessened barriers to care would ensure that patients with complex needs on Medicaid/CHIP can assess the specialists they require.
The legislation now goes into the Senate and hopefully the president’s desk for him to sign into law.
OPPORTUNITIES TO ENGAGE
Wednesday, November 6 Hydrocephalus Advocacy Update
Be sure to visit our awesome Advocacy Center and take action on our legislative alerts. We need to ensure that Congress is hearing us loudly! Want to deep dive into these issues? Don’t forget to join us for our next Advocacy Update November 6th at 7:00 pm Eastern. If you haven’t signed up yet, click here to register.
September – November Walk Season
Fall means WALK SEASON! Cities around the country are hosting in-person walks to spread awareness and raise money for the hydrocephalus community. They are a great opportunity to meet others in your local hydrocephalus community.
To find a WALK close to you, please visit our WEBSITE .