TELL CONGRESS: Advance the Access to Marketplace Insurance Act

The Coalition for Hemophilia B is working with an organization called United for Charitable Assistance to ensure that receiving third-party assistance with the costs of treatment is not an obstacle to accessing affordable care. The issue is being addressed in this case through the reintroduction of federal legislation called the Access to Marketplace Insurance Act.

The legislation would allow people living with rare and chronic illnesses to access nonprofit patient assistance programs without health insurance providers prohibiting the acceptance of premium assistance or cost-sharing assistance on their behalf. The legislation modifies a current CMS Rule that allows health insurance providers to prohibit accepting charitable assistance. This prohibition is viewed by many as a stealthy way to undercut ACA (Obamacare) reforms that ended insurer’s pre-existing condition exclusions.

YOU can assist us in getting this legislation passed. Right now, advocates are focusing on ensuring that the legislation has bipartisan support. As a part of that effort, we are targeting specific legislators as cosponsors based on their support for this legislation in an earlier Congress. PLEASE CHECK THE LIST BELOW. If you see someone listed who represents your state (Senate), or your district (HOUSE), now is the time to reach out to them. Their email addresses are listed and so is the address for their lead staff who should be copied. You can always look up the contact information of any member of Congress here: https://www.congress.gov/members 

Then, customize the sample letter that appears after the list to contact the legislator and staff member. Please send The Coalition for Hemophilia B a copy as well.

If none of your elected members of Congress appear on the list, please think about what friends you may have in these districts. You can also use this opportunity to educate yourself and others about this important issue and prepare for additional actions in the future.

Thank you for your help and let us know if you have any questions.

LIST OF TARGETED POTENTIAL SPONSORS AND LEAD STAFF

Senate:

·         Senator Kyrsten Sinema (D-AZ)

o   Frank Smith:  Frank_Smith@sinema.senate.gov

·         Senator Mark Kelly (D-AZ)

o   Katherine Phillips:  Katherine_Phillips@kelly.senate.gov

House of Representatives:

·         Congressman Seth Moulton (D-MA-6th; Salem, Ipswich, Gloucester)

o   John Chambliss:  John.Chambliss@mail.house.gov

·         Congressman Emmanuel Cleaver (D-MO-5th; Kansas City, Independence, Higginsville)

o   Devin Kelsey:  Devin.Kelsey@mail.house.gov

·         Congressman Darren Soto (D-FL-9th; Kissimmee, Orland, Winter Haven)

o   Nicole McLaren: Nicole.McLaren@mail.house.gov

·         Congressman Bobby Rush (D-IL-1st; South West Chicago)

o   Lauren Citron: Lauren.Citron@mail.house.gov

·         Congresswoman Chellie Pingree (D-ME-1st; Portland, Augusta, Waterville)

o   Evan Johnston: Evan.Johnston@mail.house.gov

·         Congresswoman Suzan DelBene (D-WA-1st; Kirkland, Mount Vernon)

o   Kyle Hill kyle.hill@mail.house.gov

·         Congressman John Garamendi (D-CA-3rd; Davis, Fairfield)

o   Jacob Jernigan: jacob.jernigan@mail.house.gov

·         Congresswoman Brenda Lawrence (D-MI-14th; Detroit, Southfield)

o   Zachary Weber: Zachary.Weber@mail.house.gov

·         Congresswoman Terri Sewell (D-AL-7th; Birmingham, Montgomery, Selma, Tuscaloosa)

o   Earl Flood: earl.flood1@mail.house.gov

SAMPLE LETTER (Customize)

Dear (Include Legislator AND Staff Person’s Name):

I am reaching out to you today as a constituent from (Insert City & State). I am a person affected by hemophilia B and a member of the Coalition for Hemophilia B. I am also an advocate for all Americans affected by rare conditions. Continued and unrestricted access to lifesaving, life-sustaining, and life-improving treatments is of paramount importance to the rare disease community. Patient assistance programs offered by nonprofit organizations help many patients maintain coverage and access. Please consider becoming an initial cosponsor of the Access to Marketplace Insurance Act to facilitate bipartisan reintroduction of this important legislation and to provide the patient community with the opportunity to advocate for the bill and raise awareness of barriers to charitable assistance.

[If you received assistance with the cost of treatment from an outside organization, please include something about your experience if you are comfortable.]

The Access to Marketplace Insurance Act would allow people living with rare and chronic illnesses to access nonprofit patient assistance programs without health insurance providers prohibiting the acceptance of premium assistance or cost-sharing assistance on my behalf. The legislation modifies a current CMS Rule that allows health insurance providers to prohibit accepting charitable assistance. This prohibition is viewed by many as a stealthy way to undercut ACA reforms that ended insurer’s pre-existing condition exclusions. This bill attracted over 170 bipartisan cosponsors previously, including your office.  

Thank you for considering this request. Senator Cramer (Grace Bruno, Health LA) and Congressman Buddy Carter (Nick Lisowski, Health LA) are prepared to drop the bill and are simply awaiting initial cosponsors and continued bipartisan support. On behalf of the local rare disease community, we hope we can continue to count on your office for this support. Please let me know if you have any questions. I look forward to hearing from your office in this regard.

Sincerely,

YOUR NAME 

YOUR ADDRESS