RDLA “Rare Disease Legislative Advocates – A Program of the Everylife Foundation for Rare Diseases”

This email blast from RDLA contains Capitol Hill Updates, Community Action Alerts and Policy Resources, and Community Events.  Read it here…




The BCRA and Healthcare Reform: NORD’s Latest Update

Posted by Paul Melmeyer

A note from Paul Melmeyer, NORD’s Director of Federal Policy, on where healthcare reform stands as of today and how to get involved.


6/22/17  NORD issues statement regarding the Better Care Reconciliation Act:

National Organization for Rare Disorders, Inc. (NORD)

“Today, the Senate #HealthcareBill was released. After reviewing the discussion draft of the Better Care Reconciliation Act of 2017 (BCRA), NORD finds that it fails to meet several of NORD’s Principles for Healthcare Reform. As the bill is currently written, we are urging both Republican and Democratic Senators to oppose this current draft, and we will continue to lead the rare disease patient community in opposition to this proposal. Read our full statement below.”




Milwaukee, WI – The following joint statement was released today by the American Academy of Allergy, Asthma & Immunology (AAAAI) and the American College of Allergy, Asthma & Immunology (ACAAI).
The AAAAI and ACAAI are gravely concerned about the impact President Trump’s proposed budget, will have on the future of medical research. We call on Congress to reject the proposed cuts to the National Institutes of Health (NIH) and instead, build on the commitment made last year to begin increasing spending for medical research.
The President’s budget blueprint recommends significant, largely unspecified, cuts to the budget of the NIH. In total, the proposed reduction would amount to approximately 20 percent of the NIH’s entire budget.
AAAAI President David B. Peden, MD and ACAAI President Stephen A. Tilles, MD said the following upon learning of the proposed cuts:
“Although the budget blueprint released by President Trump earlier today is short on specifics, it is hard to imagine how cuts of this magnitude could be accomplished without doing serious harm to the core mission of the NIH – medical research. Together, we call upon Congress to reject any cuts to the NIH that would decrease the NIH’s ability to conduct life-saving medical research and training.”
NIH, and in particular the National Institute of Allergy and Infectious Diseases (NIAID), the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute of Environmental Health Sciences (NIEHS) are providing vital funding for medical research that could lead to life-improving treatments for individuals suffering from allergies, asthma, immunologic disorders and infectious diseases (including HIV/AIDS, emerging and reemerging infectious diseases).
Each year, billions of dollars are spent treating the causes and symptoms of food, drug and skin allergy, immunodeficiency, and asthma. Through the work of NIAID, NHLBI and NIEHS and the research they are funding, we have the opportunity to identify and develop life-saving and life-improving treatments for these widespread chronic conditions.
This past October, NIAID researchers announced promising results from an NIH sponsored clinical trial on the efficacy and value of an intervention for treating children and young adults with peanut allergies. This January, an NIAID-sponsored expert panel issued clinical guidelines to help healthcare providers give parents and caregivers important information on early introduction of peanut-containing foods to infants to prevent the development of peanut allergy. These are the type of results the American people can expect from supporting NIH (NIAID, NHLBI and NIEHS) and their medical research mission.
AAAAI and ACAAI call on Congress to continue its bi-partisan support for the NIH and the NIAID, NHLBI and NIEHS as it completes the 2017 appropriations process and embarks on enacting appropriations bills for fiscal year 2018.
The AAAAI represents allergists, asthma specialists, clinical immunologists, allied health professionals and others with a special interest in the research and treatment of allergic and immunologic diseases. Established in 1943, the AAAAI has more than 7,000 members in the United States, Canada and 72 other countries.
The AAAAI’s Find an Allergist/Immunologist service is a trusted resource to help you find a specialist close to home. For more information, visit aaaai.org.
Megan Brown
(414) 272-6071