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Welcome to Legislative Rare Disease Advocacy with EBE, LLC
Our Mission in Rare Disease Legislative Advocacy
At EveryBody Empowered, LLC, we are committed to advocating on behalf of people with rare diseases to help educate our legislators about the issues affecting our healthcare communities, and by advocating for support of bipartisan legislation that aims to protect, help, improve or advance rare disease related issues, research, drug development and policy affecting the rare disease patient community. We actively want to help empower our legislators to help empower Rare Disease Patients and our Healthcare Communities through our commitment to bipartisan legislative rare disease advocacy.
Aimee Zehner, Rare Disease Advocate & Patient
Aimee Zehner is a fierce yet compassionate leader, and quickly on the rise amongst the Rare Disease Community, as a Rare Disease Advocate and Voice to be Heard. Aimee is making a name for herself as a knowledgable and caring Rare Disease Specialist, helping to educate patients and medical professionals about rare diseases like Myasthenia Gravis and Gastroparesis. As a Rare Disease Patient herself, she understands the plight of patients who battle symptoms with no cure or tailored treatments in the pipeline due to the rarity of diseases and subtypes. Aimee participates in bipartisan legislative rare disease advocacy by atteding meetings with Congressman and Senators to share her own patient story and ask her legislators to vote in favor of bipartisan legislation that will positively impact the Rare Disease Community across America, which has a ripple effect across the world. All of our efforts matter when it comes to advocating for people with rare diseases.
EverBody Empowered, LLC is proud to announce that Rare Disease Legislative Advocate, Aimee Zehner, participated in RDLA's RARE ACROSS AMERICA 2023, and was invited to act as a Team Leader for meetings with NY State Senators. Aimee was honored to accept this role and help facilitate these important Senator meetings so fellow Rare Disease Patients & Advocates may share their patient stories and ask for support of relevant rare disease related legislation.
Ready to get involved in Legislative Advocacy on behalf of the Rare Disease Community?
There are many great organizations that participate in legislative rare disease advocacy on behalf of the Rare Disease Community at large, and for specific Rare Disease Communities. Depending on your own personal interests, as a patient, family member, loved one, caregiver or healthcare provider who cares for a patient or patients with rare diseases, you may want to connect with a particular rare disease related organization and check out their advocacy pages. Organizations such as the Rare Disease Legislative Advocates (RDLA) via EveryLife Foundation have been a wonderful resource for Advocates/Patients like Aimee Zehner. They can help you with learning about current legislation of interest, how to make an "ask" of a legislator, how to find and contact the Senators and Congressmen in your State and Local District, and so much more. Aimee continues to advocate with the RDLA, and highly recommends them. There are other national and local organizations that engage in legislative advocacy.
We are listing a few resources and links (below) on this page, but by no means is this to be considered an exhaustive list. Please do your research to find reputable organizations to advocate with. And as a reminder, Rare Disease Legislative Advocacy is FREE for ALL! If you encounter any issues, or would like some guidance in figuring out where to go participate as a Rare Disease Advocate, email us with your questions: info@everybodyempowered.com.
Legislative Rare Disease Advocacy: How to get involved!
Rare Disease Legislative Advocates (RDLA) via The EveryLife Foundation:
Legislative Advocacy: Fighting for your Rare Disease, Chronic Illness or Disability On Your Own
Legislative Advocacy through specific Disease or Disability Patient Organizations:
Connecting Rare Disease Advocates with opportunities to meet with Legislators regarding bi-partisan legislative rare disease advocacy while, providing training and guidance on advocacy best practices.
"RDLA is a clearinghouse of ideas that is open to all members of the rare disease community with an interest in sharing information around c
Connecting Rare Disease Advocates with opportunities to meet with Legislators regarding bi-partisan legislative rare disease advocacy while, providing training and guidance on advocacy best practices.
"RDLA is a clearinghouse of ideas that is open to all members of the rare disease community with an interest in sharing information around common causes and advocating for the introduction or enactment of legislation. It does not promote any specific policy, but provides support to all rare disease organizations seeking introduction/enactment of legislation. RDLA’s monthly meetings and website are an educational resource and a platform for individual organizations to promote their legislation."
Visit Rare Disease Legislative Advocates (RDLA):
https://everylifefoundation.org/rare-advocates/
For Education & Advocacy Tools:
https://everylifefoundation.org/rare-advocates/advocacy-tools/
Find your State Representative:
https://everylifefoundation.org/rare-advocates/advocacy-tools/find-your-representative/
Rare Disease Week on Capitol Hill
https://everylifefoundation.org/rare-advocates/rare-disease-week/
Rare Across America
https://everylifefoundation.org/rare-advocates/rare-across-america/
Information & links above were copied/pasted from RDLA and The EveryLife Foundation website for the sole purpose of sharing information.
Legislative Advocacy through specific Disease or Disability Patient Organizations:
Legislative Advocacy: Fighting for your Rare Disease, Chronic Illness or Disability On Your Own
Legislative Advocacy through specific Disease or Disability Patient Organizations:
Participate in legislative advocacy with a patient organization that supports bills, policies or requests from/for your specific disease/disability community.
Most Patient Organizations especially for Rare Diseases and Ultra-Rare Diseases, get involved in Legislative Advocacy, to bring issues to Senators and Congressman for their support o
Participate in legislative advocacy with a patient organization that supports bills, policies or requests from/for your specific disease/disability community.
Most Patient Organizations especially for Rare Diseases and Ultra-Rare Diseases, get involved in Legislative Advocacy, to bring issues to Senators and Congressman for their support on policy and specific issues impacting their communities. These individual patient organizations welcome participation from their members. The organization may organize events or participate in events that provide opportunities for members to advocate and possibly speak with their local Congressmen or State Senators.
Feel free to connect with RDLA and the EveryLife Foundation, NORD, and NIH for information, statistics, and resources that may help you and the patient organization craft your documentation for presenting to Legislators.
NORD: https://rarediseases.org
NIH: https://www.nih.gov/
EveryLife Foundation: https://everylifefoundation.org/
RDLA:
https://everylifefoundation.org/rare-advocates/
Legislative Advocacy: Fighting for your Rare Disease, Chronic Illness or Disability On Your Own
Legislative Advocacy: Fighting for your Rare Disease, Chronic Illness or Disability On Your Own
Legislative Advocacy: Fighting for your Rare Disease, Chronic Illness or Disability On Your Own
Contact your State Senators and local Congressmen with your own specific requests for support of bills, actions, policies or requests that impact your specific disease/disability community, or for yourself (or loved ones).
If you are considering putting together a bill, you will first want to research and see what exists before Congress/Se
Contact your State Senators and local Congressmen with your own specific requests for support of bills, actions, policies or requests that impact your specific disease/disability community, or for yourself (or loved ones).
If you are considering putting together a bill, you will first want to research and see what exists before Congress/Senate. Your desired policy or policy changes may already be in action via an existing bill. Do your homework before you move forward with contacting your legislators. Check out the government websites, and utilize resources and info like those available via RDLA, or through known patient organizations.
RDLA offers excellent training and opportunities for learning how to craft One pagers for presenting to legislative offices when you submit inquiries or requests.
What if you are the only person or one of few people with your Rare Diseases?
If you are the only person with your disease, or there are very few people on the planet with your disease or in the USA, you will likely want to gather participation to share in advocacy, so that your request has a better chance of receiving attention and assistance. Again, I highly recommend RDLA via the EveryLife Foundation for help in taking on Legislative Advocacy.
Feel free to connect with RDLA and the EveryLife Foundation, NORD, and NIH for information, statistics, and resources that may help you craft your documentation for presenting to Legislators. See links in other section for access.
Previous Legislative ASKs - Bi-Partisan Rare Disease Legisla
The STAT Act: Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670.
The STAT Act: Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670.
The STAT Act: Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670.
Did you know that the development process for a rare disease drug takes an average of 15 years?
For the more than 30 million Americans living with rare diseases, 15 years is too long. We need therapies…STAT.
Support the STAT Act — Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670.
Th
Did you know that the development process for a rare disease drug takes an average of 15 years?
For the more than 30 million Americans living with rare diseases, 15 years is too long. We need therapies…STAT.
Support the STAT Act — Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670.
The STAT Act, H.R. 1730/S. 670, is a bipartisan, bicameral, community-led bill aimed at improving the development of and access to therapies for the rare disease community.
The STAT Act seeks to enact targeted, impactful, and attainable policy reforms at the Food and Drug Administration (FDA) to accelerate development of therapies across the spectrum of rare diseases and disorders and facilitate patient access to such therapies.
The STAT Act will improve rare disease coordination, stakeholder engagement, and policy development within FDA by expanding existing authority to create a Rare Disease Center of Excellence; inform rare disease policies and actions by creating a Rare Disease and Condition Drug Advisory Committee; fund regulatory science and related activities to support development of therapies to treat very small rare disease populations; and strengthen rare disease patient access to FDA-approved therapies in both public and commercial plans.
The STAT Act was conceived by the rare disease community through dozens of public forums where all stakeholders have been welcome. The bill was developed by a coalition made up of hundreds of patient organizations and healthcare industry members through a highly collaborative process led by the EveryLife Foundation’s Community Congress.
What will the STAT Act do?
- Accelerate rare disease therapy development
- Optimize interagency coordination
- Advance science-based regulatory policies
- Facilitate access to therapies
https://everylifefoundation.org/stat-act/about-the-stat-act/
Information & links above were copied/pasted from RDLA and The EveryLife Foundation website for the sole purpose of sharing information.
The Access to Rare Indications Act of 2021, H.R. 6160
The STAT Act: Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670.
The STAT Act: Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670.
Access to Rare Indications Act, H.R. 6160
Representatives Matsui (D-CA), Thompson (D-CA), Kelly (R-PA) and Mullin (R-OK)
ENSURE RARE DISEASE PARITY IN ACCESSING MEDICALLY NECESSARY CARE IN MEDICARE AND MEDICAID
Problem. There are often so few patients with a very rare condition that drug companies will not, or often cannot, do a clinical t
Access to Rare Indications Act, H.R. 6160
Representatives Matsui (D-CA), Thompson (D-CA), Kelly (R-PA) and Mullin (R-OK)
ENSURE RARE DISEASE PARITY IN ACCESSING MEDICALLY NECESSARY CARE IN MEDICARE AND MEDICAID
Problem. There are often so few patients with a very rare condition that drug companies will not, or often cannot, do a clinical trial for every subtype of a rare condition. Patients are then left fighting for off-label access to a treatment. For patients relying on Medicare Part D, access to off-label treatments within the standard of care can be particularly problematic since Part D plans are prohibited from including off-label uses not listed in compendia in the Part D benefit. For these patients, there is not even an appeal or reconsideration mechanism available to overcome the “fact” that the prescribed use is outside of the Part D benefit. Additionally, these treatments are often used in combination with other FDA approved treatments, making the FDA approved treatment more effective or supporting the effectiveness of the FDA approved treatment. Managing all of this can be quite challenging for a patient attempting to live as best they can with a rare disease and navigate the complexity of the healthcare system. Solution. Ensure parity in coverage for Medicare and Medicaid beneficiaries with lowprevalence conditions by aligning the statutory definition of “medically accepted use” for lowprevalence conditions with sources likely to include the standard of care, i.e., FDA label, compendia, peer-reviewed literature, and opinion of disease experts identified by relevant societies. Precedent. Over a decade ago, oncologists and cancer patients faced a similar situation and Congress passed a law deeming certain uses of anti-cancer treatments as “medically accepted,” effectively requiring Medicare to cover anti-cancer treatments for off-label indications if those indications were listed in a compendia or there were two or more peer-reviewed articles supporting an off-label use. The circumstances that drove that legislation for oncology all those years ago, is very much the circumstance that rare patients find themselves in today. 7,000+ rare conditions, most without treatments, means an off-label use is often patients’ only hope.
For more info, please view the One Pager:
https://everylifefoundation.org/wp-content/uploads/2022/02/One-Pager-RARE-INDICATIONS-10-28-21.pdf
Information & links above were copied/pasted from RDLA and The EveryLife Foundation website for the sole purpose of sharing information.
Newborn Screening Saves Lives
The STAT Act: Speeding Therapy Access Today Act of 2021, H.R. 1730/S. 670.
Newborn Screening Saves Lives
NEWBORN SCREENING
TAKE ACTION
Join the fight to protect and advance
one of America’s most successful public health programs! For more than 50 years, every newborn in the U.S. has been screened for a range of debilitating and deadly diseases through a dried blood spot taken by a heel prick. Every year, 12,000 babies and their families benef
NEWBORN SCREENING
TAKE ACTION
Join the fight to protect and advance
one of America’s most successful public health programs! For more than 50 years, every newborn in the U.S. has been screened for a range of debilitating and deadly diseases through a dried blood spot taken by a heel prick. Every year, 12,000 babies and their families benefit from newborn screening through the early detection of disease and the delivery of life-saving treatments. Newborn screening is widely recognized as one of the largest and most successful disease prevention programs in the history of the U.S.
Yet, our nation’s newborn screening system is unsustainable, and our babies are at risk.
The federal law that supports newborn screening programs expired two years ago. Currently, 33 states do not screen for all of the federally recommended conditions, leaving hundreds of babies undetected and without timely treatment each year. Newborn screening programs are in critical need of funding and resources. And limitations to the current system yield significant delays between the availability of a treatment and implementation of screening, putting infants and children at risk for preventable mortality and disability.
We can do better. Here’s how you can help.
https://everylifefoundation.org/newborn-screening-take-action/
Newborn screening programs vary widely by state, leading to disparate health outcomes. Learn about the progress made in ensuring babies born in every state have the same opportunity for diagnosis, current federal and state bills, and how to take action.
Find out how newborn screening programs are managed and how each state’s newborn screening program compares to federal recommendations. Access key publications, a glossary, patient and caregiver stories, and the latest newborn screening news.
https://everylifefoundation.org/newborn-screening-take-action/learn-more/
2022 State Newborn Screening Bills
Every year, states introduce new legislation affecting newborn screening programs. These pieces of legislation vary and do things like change the fee for newborn screening, add disorders to the state screening panel, and amend the timeframe in which newborn screening must take place. Below is a list of legislation affecting newborn screening introduced in the 2022 legislative session. The bills are hyperlinked to their full text and are color coded based on where there are at in the legislative process. Below is a key that explains what each color means. If you are interested in learning more about newborn screening, please visit our Action Center. For questions about the EveryLife Foundation’s newborn screening initiatives, please email Dylan at dsimon@everylifefoundation.org
How to Raise Awareness for Newborn Screening:
https://everylifefoundation.org/newborn-screening-take-action/raise-awareness/
Newborn Screening Saves Lives Reauthorization Act H.R. 482/ S.350
https://everylifefoundation.org/newborn-screening-take-action/support-legislation/#federal-bills
Read the bill and view all current Newborn Screening Saves Live Reauthorization Act cosponsors in the House and Senate.
Diagnosis through newborn screening saves lives, improves healthcare outcomes, and reduces long term healthcare costs by allowing for detection and intervention at the earliest moment possible.
Authorization for the federal newborn screening programs expired in September 2019. The Newborn Screening Saves Lives Reauthorization Act reauthorizes existing federal programs that:
- Assist states in improving and expanding programs
- Support parent and provider education
- Ensure laboratory quality and effective surveillance
- Facilitate adding of conditions to the Recommended Uniform Screening Panel (RUSP)
Status of the Bill
- Federal newborn screening programs expired on September 30, 2019.
- The House and Senate both introduced legislation that used the same language to re-authorize and build upon the current federal newborn screening program.
- The House passed the legislation June 23rd and the Senate legislation is still pending.
- The legislation has been held up due to a proposed amendment that would require parents to opt-in (with informed consent) to allow their newborn’s unidentified dried blood spot (DBS) to be used for research, which would break down the entire newborn screening system. Public health laboratories and scientific researchers need DBS to conduct life-saving research to improve the current tests and work to develop new treatments for the thousands of rare diseases still without a cure. Complying with this amendment would place a high burden on hospitals that would likely choose not to participate in collection of DBS. Studies have demonstrated that 90%-99% of parents choose to opt-in; but at times only half of parents are asked by hospital staff due to the compliance burden.
Information & links above were copied/pasted from RDLA and The EveryLife Foundation website for the sole purpose of sharing information.