August | 2023
Registration for this year’s Virtual United Against Ataxia
Hill Day is now open! 

Register to be an Ataxia Advocate on Hill Day. This year we will be advocating for the Continued Inclusion of Hereditary Ataxia in the CDMRP. This initiative makes millions of dollars in research grant funding available for ataxia researchers to apply for. Sign up today to make a difference! 

Registration requires two steps: 

  1. Sign up to participate in Hill Day
  2. Look out for the links to the required one-hour training video and training survey in your registration confirmation email. Watch the training video and complete the video survey by August 28th. 
  3. Attend an optional Hill Day Q&A session on August 28th at Noon or 7pm ET. This will be an open Q&A format to answer all your questions that were not addressed in the training video.
Important! Your Congressional meetings will not be scheduled until you complete the training video survey. 

Wondering what your role in a Congressional meeting might be like? Check out this Mock Congressional meeting video.
  
Also, be sure to check out the Hill Day website where you can find resources to help you prepare for your meetings such as one-pagers for the legislative asks, tips for sharing your story, and more as those resources become available.
Advocate Survey 

Advocacy can impact the Ataxia community, from diagnosis delivery to patient care coordination. Please help us know our community’s advocacy interests and priorities by participating in the advocacy survey below.
Advocacy for Ataxia: My Virtual Experience on Hill Day
by Mark Hazlin, NAF Board Member
Mark Hazlin shares his story about participating in the 2021 Hill Day and why he supported NAF in this mission. Discover how the emotional power of personal stories and community can drive change for Ataxia when you participate in Hill Day. Read Mark's full story below and join us at this year's Hill Day on September 20th!
Advocacy News & Policy Updates
FAA Reauthorization is Passed by House 
Reported by MDA 
Big news out of Washington, D.C.! The U.S. House just passed a bill to reauthorize the Federal Aviation Act (FAA), which includes the most transformative air travel accessibility reforms since the 1980’s! 
This bill includes provisions that will: 
  • Mandate training for airline or airport personnel who assist passengers and/or handle wheelchairs 

  • Strengthen the complaints process when airlines violate civil rights 

  • Update Department of Transportation standards for responding to complaints about lost, broken, or damaged wheelchairs 

  • Set a concrete timeline and plan to finally allow people to fly in their wheelchairs 

  • And much more. 

This victory was possible because advocates like you raised your voices and urged your members of Congress to finally make air travel accessible for people living with a disability! 
And for that, thank you! 

This was a big victory in our effort to finally make air travel accessible, but we’re not done yet. Now, the action moves to the U.S. Senate, which is debating its own bill to reauthorize the FAA. If you haven’t yet, please urge your Senators to make air travel accessible as they debate this vital bill. 
Accelerating Kids’ Access to Care Act Introduced
The Accelerating Kids’ Access to Care Act (AKACA) S 2372 / HR 4758, was introduced on a bipartisan and bicameral basis! NAF joined the support letter with 215 organizations and Children’s Hospitals. The list of supporters was also included in the press releases in both the House and Senate sponsors. 
Genetic Counselor Services Act Reintroduced
The Access to Genetic Counselor Services Act has been reintroduced to the House as H.R. 3876 by Representatives Adrian Smith (R-NE-3) and Brian Higgins (D-NY-26). This bill provides for coverage under Medicare for genetic counseling services that are furnished by genetic counselors. Covered services include those services, as well as incidental services and supplies that would otherwise be covered under Medicare if provided by a physician.
FY 2024 Appropriations Updates 
Congress is officially in recess for the month of August. Before adjourning, the Senate Appropriations Committee completed its full slate of 12 appropriations bills that propose Fiscal Year 2024 (FY24) discretionary funding allocations to Federal government departments, agencies, and programs. The House has passed the Agriculture-FDA bill out of the full Appropriations Committee and the Labor-HHS bill out of subcommittee. The House cut funding to health programs, cutting the Agriculture-FDA bill 2 percent ($532 million) and the Labor-HHS 29 percent ($60.3 billion) below FY23 levels. When Congress returns from recess, they will have until the end of September to pass a budget or risk a government shutdown. 

The budget chart indicates where funding for NIH, CDC, FDA, AHRQ, NSF, and ARPA-H stand today.
Affordability of Prescription Drugs Under the Inflation Reduction Act (IRA) 
The Centers for Medicare and Medicaid Services (CMS) finalized a key component of the Inflation Reduction Act (IRA)’s Medicare Drug Price Negotiation Program (MDPNP), outlining how the agency aims to lower some prescription drug costs. 
 
For the first time, due to the Inflation Reduction Act, the Centers for Medicare & Medicaid Services (CMS) will be able to negotiate the prices of certain prescription drugs. This will have significant impacts for some rare disease patients on their ability to afford needed treatments but could also impact broader rare disease drug development by disincentivizing orphan drug research. 

NAF supports NORD in taking a leading role to ensure this law ultimately benefits patients and families living with rare disease. NAF joined a letter sent to CMS signed by more than 100 member organizations, detailing the concerns of the rare community.  

Check out the latest Rare Disease Congressional Caucus Briefing: Delivering on the Rare Disease Community’s Imperative of Policies that Leave No One Behind
Rare Disease Legislative Advocates, in cooperation with the Rare Disease Congressional Caucus held an exceptional panel discussion during the congressional briefing July 19. 
Take Action
Request for Comments Regarding Regulatory Flexibility for SCA3

The FDA recently issued a Refuse to File letter to Biohaven regarding it's New Drug Application (NDA) for troriluzole to treat SCA3. The SCA community deserves to be heard and learn from the FDA whether this treatment meets the criteria for approval. NAF calls on the FDA to apply regulatory flexibility and accept the NDA filing for troriluzole. Read our full statement.

We want to represent your voice! We will be providing feedback to the FDA that outlines the patient and clinician perspective regarding this decision and the need for applying regulatory flexibility when reviewing an application for a new drug. Complete our survey by August 21st. 
MDA’s Effort to Improve Hotel Accessibility Information
 
Do you have difficulty finding an accessible hotel room? Are you frustrated by the lack of information about accessible rooms on hotel websites? Have you showed up to a hotel thinking you booked an accessible room, but the hotel has given it to another guest? If so, we want to hear your story. 

MDA is teaming up with the Disability Rights Education and Defense Fund, Paralyzed Veterans of America, the National Disability Rights Network, The Arc, and the law firm of Fox & Robertson to submit a brief for an upcoming US Supreme Court case about accessibility information on hotel websites and we need your story to share with the Court. 
Let’s Urge Congress to Improve Access to Genetic Counselors 

Too many people with neuromuscular disease have difficulty obtaining an accurate diagnosis. This “diagnostic odyssey” can take months or years to resolve and leads to frustration and hardship for patients and their families who want answers and appropriate treatments. 

One way to shorten this diagnostic odyssey is to increase access to genetic counselors, who can help people obtain and interpret genetic testing. Unfortunately, there are just not enough counselors to meet the demand and those with an NMD miss out on needed care. 

However, Congress can help by supporting the Access to Genetic Counselor Services Act.
Ataxia Advocates Join Rare Across America 

NAF Staff and Ataxia community member joined other rare disease advocates this month in Rare Across America. Advocates will be meeting with Members of Congress to increase the number of members in the Rare Disease Congressional Caucus and gain support for the Safe Step Act H.R 2630/S. 652 and HELP Copays Act H.R 830/S. 1375. 

To learn more and send a pre-written email to your members of Congress visit these links: 
Advocates, Ask your Member of Congress to Sign the Letter to the FDA.

Take action and ask your Members of Congress to join the Co-chairs of the Congressional Rare Disease Caucus in a sign-on letter requesting the formation of an internal FDA task force to review and inform agency-wide rare disease activities. Use our pre-filled form here. It takes less than a minute to complete. The FDA has developed multiple programs to help strengthen its rare disease infrastructure. However, the impact of those new initiatives is not yet consistently felt by the community. An internal task force would evaluate and inform the FDA’s rare disease activities and processes that are in place to ensure they benefit the entirety of the community.  
Ask Legislators to Support Funding for the BRAIN Initiative.

The American Brain Coalition is asking for your help in advocating for support of the BRAIN Initiative. Further investment in this pioneering research brings us closer to better treatments, prevention, and cures of brain diseases and disorders. Congress invested an unprecedented $680 million in the BRAIN Initiative in Fiscal Year 2023, but continued research requires continued investment. Congress needs to hear from you! Contact your legislator. 
ADVOCACY EVENTS
Rally for Medical Research Hill Day 
 
Thursday, September 14, 2023 in Washington DC, with the “Rally Hill Day” reception taking place during the evening of Wednesday, September 13, 2023. This initiative is an opportunity for supporters from the 400 participating organizations to join together to speak with one voice about making NIH a national priority. 

Global Genes Rare Advocacy Summit

Tuesday, September 19, 2023 - Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies at the RARE Advocacy Summit.

NORD Rare Diseases and Orphan Products Breakthrough Summit

October 16-17, 2023 - in Washington, DC, join hundreds of rare disease advocates, experts, and stakeholders from around the world to tackle the most pressing issues facing the rare disease community.
United Against Ataxia Virtual Hill Day 

September 20, 2023
How to Participate in the IAAD 2023 Campaign
 
Submit a Photo
  1. Print the "Ask Me About Ataxia" Sign.
  2. Have someone take a photo of you holding it.
  3. Briefly tell us about yourself. You can use the bolded text below as a template.
  4. Email your photo and description to NAF@Ataxia.org.

Submit a Video
  1. Print the "Ask Me About Ataxia" sign.
  2. Set up your phone to record or have someone record you. Personalize the bolded text and repeat it on camera.
  3. Introduce yourself: Hello. My name is _____ and I have Ataxia/Type of Ataxia/Relationship to someone with Ataxia.
  4. Answer the question, "What do you want someone to know about Ataxia?" This can be a symptom, how it affects your daily life, or a description of the disease: I want you to know that Ataxia... is a movement disorder/ is a neurological disease/ causes slurred speech/ causes me to lose my balance/ makes walking difficult/can be isolating/ makes people think I am drunk/ is not well known/ etc.
  5. Lift the "Ask Me About Ataxia" sign. (You can also hold it in the video.) Say "I want you to... Ask Me About Ataxia".
  6. Upload your video to this link.
Advocacy Training & Opportunities
These resources by the Rare Disease Legislative Advocates (RDLA) are designed to help rare disease patients, parents, caregivers and others to make their voices heard. If you would like more information about a topic or have tools to share, please contact us at naf@ataxia.org.
More Legislative issues can be found on the Advocacy webpage
Find Your Local Representatives:
763-553-0020 | naf@ataxia.org