Mark Steingesser Profile

By Marc Steingesser
NFED Liaison

On Tuesday, September 29th, I represented the NFED on Capitol Hill along with Jeanne Wang and her son, Nollan, and Kristin Matus-Kelso and her daughter, Ally. We joined other rare skin disorder advocates and members from the American Academy of Dermatology (AAD) to share our concerns and issues with members of Congress.

Kristin, Ally, Nollan and Jeanne on Capitol Hill
Kristin, Ally, Nollan and Jeanne on Capitol Hill

During our visits with Capitol Hill legislators we had the opportunity to:

Share our thanks for ongoing support of medical research funding provided to the National Institutes of Health that in turn helped fund the research and development of Edimer’s EDI200 treatment which is currently in human trials for X-linked hypohidrotic ectodermal dysplasia, as well as research on the p63 gene (associated with AEC and EEC syndromes) being conducted by Maranke Koster, Ph.D. and her regenerative medical research team at the University of Colorado.

Request support for legislation that would prevent targeting and elimination of “high cost” physicians from Medicare insurance provider networks. This group of targeted physicians are often those treating patients with the most need (hence, the higher overall associated cost), and are often the best and only choice (due to specialized knowledge and experience) for those affected by rare conditions. Physicians who have the same specialty title often do not have the same level of ability to treat patients with rare conditions. Therefore, eliminating physicians associated with costing insurance companies more will likely cut off access to care that those affected by rare conditions are already challenged to find.

Request support for legislation that would prevent insurance companies from:

Making drugs financially inaccessible to patients via drug tier classifications tied to uncapped large percentage copays.

Manipulating which drugs are classified as “preferred” via secret cost/profit based negotiations with drug companies.

Dictating (i.e. overriding physicians’ judgment regarding) which drugs should be used first, second, third, etc. to treat patients; a practice concerned more with controlling costs for the insurance company than with efficacy of treatment for the patient.

Marc Steingesser/NFED, Dr. Alison Erhlich/AAD Member, Alexandra Manardy/Staff member for Senator Cardin, Samantha White/BCCNS Life Support Network, Dr. Andrew Lazar/AAD Member, Miranda Guerriero/National Alopecia Areata Foundation, and Dr. Ali Hendy/AAD Member.
Marc Steingesser/NFED, Dr. Alison Erhlich/AAD Member, Alexandra Manardy/Staff member for Senator Cardin, Samantha White/BCCNS Life Support Network, Dr. Andrew Lazar/AAD Member, Miranda Guerriero/National Alopecia Areata Foundation, and Dr. Ali Hendy/AAD Member.

All of these issues significantly impact the NFED community, and the entire nation. The partnering of patient advocate groups, like the NFED, with organizations such as the AAD greatly strengthens our voice and message with lawmakers on Capitol Hill by providing people with experiential stories that put a face to the impact and importance of existing and needed policy and law.

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Kristin, Ally, Nollan and Jeanne with Dr. Janet Hickman, Dermatologist from Lynchburg, VA and Representative Bob Goodlatte, 6th District of Virginia

Editor’s Note:

Marc Steingesser is the Family Liaison serving families in Delaware, Maryland, Washington DC and West Virginia.

More Blog Posts About Advocacy:

Together, We Will and Can Make a Difference!

She’s an Advocate for the Community

One comment on “NFED Families on Capitol Hill”

  1. 1
    It’s Time For a Change: Advocating for Children with Rare Diseases | National Foundation for Ectodermal Dysplasias on November 6, 2015

    […] NFED Families on Capitol Hill […]

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