Get the Hydrocephalus Scoop on Capitol Hill for January 2024
Scoop on Capitol Hill by the Hydrocephalus Association
Government Shutdown Aversion!
Whew! The government is staying open. Does it feel like this news cycle is becoming the new normal? On Thursday, January 18th, the House and Senate passed a new continuing resolution (CR) that will fund a portion of the government programs until March 1. Another portion of funding will expire on March 8. This gives lawmakers six weeks to craft the Fiscal Year (FY) 2024 spending bills or they will risk another government shutdown. Congressional leaders have agreed on the total spending amount for FY 2024; however, they have not agreed on topline spending numbers for the 12 appropriation bills.
Lawmakers must come to a bipartisan agreement by March 8. If they fail to do this, they will have to pass another short-term CR. Deja vu, right? A CR could have irreversible effects on hydrocephalus research funded by the Congressionally Directed Medical Research Program (CDMRP) under the Department of Defense.
The CDMRP is funded each year by the passage of the Defense Appropriations Bill, which is one of the 12 funding bills that Congress must pass bipartisanly to fund the government. Without the passage of a FY 2024 Defense Appropriations Bill by the end of March, the CDMRP will not have the time it needs to run a full research funding cycle, meaning no research awards will be made in 2024. Funding through the CDMRP has led to breakthroughs including the first human trial of a drug that could prevent the development of hydrocephalus. CDMRP is CRUCIAL in funding the science leading to life-saving solutions that bring us closer to a cure.
For this reason, we need YOU to urge members of Congress to pass bipartisan Defense Appropriations funding by March so research grants from the CDMRP can be properly allocated to researchers. To take action, the link is provided below!
HA Signs Onto NDD United Funding Letter
The Hydrocephalus Association recently joined others in the patient organization community by signing onto a letter led by NDD United asking Congressional Leadership to use the bipartisan Senate Appropriations Committee bills as a starting point for spending negotiations. The letter also explains the negative effects of a possible year-long continuing resolution (CR), like the strong cuts in non-defense government programs that would take place. These programs include Community Health Centers which provide primary health care services for millions of Americans. To sum things up, Congress must work together to pass bipartisan appropriation bills that fund government programs and agencies for FY 2024. For more information, you can find the letter below.
NDD United Letter to Congressional Leaders
New CMS Prior Authorization Rule
The Centers for Medicare and Medicaid Services (CMS) recently finalized a rule that seeks to improve the prior authorization payer process within public programs – including Medicaid Managed Plans, Medicare Advantage Plans, Medicaid Fee-for-Service (FFS) plans, Children’s Health Insurance Program (CHIP) managed care, and Qualified Health Plans (QHP) on the health insurance marketplace. For those who may not know what prior authorization is, we can explain. This is where health plans (payers) request approval for a service or prescription in order for it to be covered by a plan. The process serves to reduce the cost of expensive treatments and determine if a service is medically necessary. Despite the good intentions of its original purpose, it has created many challenges for patients and medical providers. The process can be costly and inefficient for providers. It regularly creates large delays in care for patients, as well. CMS’s new rule looks to address some of these issues within public plans.
Firstly, the rule would require affected payers to use a specific procedure that allows different softwares to communicate and share information to automate the prior authorization process. This would allow patients to have access to their treatment requests and decisions. The provision seeks to reduce administrative burden for the providers as a whole. Next, the rule would require payers to send their prior authorization decision to the provider along with a specific reason for denial. Many plans within Medicare Advantage currently require payers to only provide this decision to the patient. The rule would also require certain payers in plans like Medicare Advantage and Medicaid managed care to speed up the prior authorization process. For expedited prior authorization requests, payers would have 72 hours to provide a decision. For standard requests, they would have only 7 days. Lastly, it would require payers to publish more data on their yearly metrics with prior authorization approvals, denials, and the average time for a prior authorization determination. Most of these rules would not be implemented until 2026. They would also not apply to prescription drugs.
There have been countless stories within the chronic condition community about the challenges that prior authorization has created. If you have endured any of these similar burdens, please let us know by emailing advocacy@hydroassoc.org!
Engagement Opportunities:
March 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 on March 6, 2024, at 7 pm Eastern. If you haven’t signed up yet, click here to register.
February 25-28 Rare Disease Advocacy Week Washington D.C.
The HA team will be attending EveryLife Foundation’s annual Rare Disease Advocacy Week on Capitol Hill taking place on February 25-27. We would love for you to join us! There will be a training for advocates on Monday the 26 followed by Congressional meetings
on Capitol Hill on Tuesday, February 27.
If you are interested in attending for a few days and possibly checking out the city, we would love for you to sign up! Kids are welcome and this is a great way to teach advocacy in person.
January 30 Advocacy Training
For those who are interested, we are hosting an online advocacy training on January 30th. Your story and passion are critical to our advocacy efforts. Your elected leaders in Congress and their staff want to hear from you and find solutions to support individuals with hydrocephalus. Being an advocate is easy and it’s also fun!
The training will educate members within the Hydrocephalus Action Network (HAN) on skills like effectively conducting a congressional meeting and sharing your story with congressional staff. We will also cover understanding the government appropriations process and its relation to hydrocephalus research funding.
Join us for a free action-packed online training on Tuesday evening, January 30th at 7pm Eastern (4pm Pacific) and learn from our advocacy team on how you can work with elected officials to create real change in your community and in Washington D.C.