03/08/2017
The CF community voice is needed! Stay up-to-date using
the new section on cff.org about health reform.
To: Care Center Staff
From: Mary Dwight and Bruce Marshall
Re: An update on health care reform
Date: March 8, 2017
Dear Colleagues,
As many of you may know, House Republicans released the first drafts of their plans to repeal and replace the Affordable Care Act this week. The CF Foundation's analysis reveals the bills from the Energy & Commerce and Ways & Means Committees will significantly reduce coverage and consumer protections for people with CF.
The Cystic Fibrosis Foundation has been engaged with House members and staff throughout this process making the needs of the community known. Earlier this week, we signed on with ten other high-profile patient organizations, signaling our core principles that health insurance should be affordable, accessible, and adequate. These principles align with those set forth by the CF Foundation and form the lens through which we will evaluate all related legislation.
The draft bills will be reviewed by several committees (aka "a markup") before they are slated to be voted on by the full House of Representatives in a couple of weeks. In advance of the first committee hearings on Wednesday, March 8th, CFF issued a statement (see below) outlining our concerns and commenting on how the bills will impact people with cystic fibrosis. Following the mark ups, the Foundation will evaluate any changes made to the bills and will consider issuing a more detailed letter to House leadership.
Of note, House Republicans must operate within the parameters of a budget resolution passed in January, thereby limiting which provisions of the Affordable Care Act they can change. In other words, the current bills cannot change non-budget related policies such as protections for pre-existing conditions, allowing dependent coverage, and eliminating lifetime and annual caps.
The CF community voice is stronger than ever. Just last week we held nearly 300 meetings with Congressional offices to discuss health care issues. We continue to need your voice. Next week the community at large will be asked to participate in a broad advocacy campaign to email and call their representatives in Congress. We hope you will join us to carry this message forward to your elected officials.
Please continue to stay up-to-date using the new section on cff.org about health reform. If you have additional questions, please contact Zoe Aldrich at zaldrich@cff.org.
We will continue to keep you posted.
Thank you for all you do for people with CF,
Mary and Bruce
Mary B. Dwight
Senior Vice President for Policy & Patient Assistance Programs
Cystic Fibrosis Foundation | National Office
mdwight@cff.org
301-841-2639
Bruce C. Marshall, M.D., M.M.M.
Senior Vice President of Clinical Affairs
Cystic Fibrosis Foundation | National Office
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
FOR IMMEDIATE RELEASE
March 7, 2017
Cystic Fibrosis Foundation Issues Statement on House Health Reform Bills
(Bethesda, MD) - The Cystic Fibrosis Foundation issued the following statement in response to the bills released by the House Energy and Commerce Committee and the House Committee on Ways and Means.
"The bills released by the two House committees this week fail to adequately protect people living with cystic fibrosis and place the lives of millions of Americans living with serious and chronic diseases at risk.
The CF community has come so far in the fight against this deadly disease, and it's crucial that this progress is not jeopardized by inadequate, unaffordable health care coverage. At a time when advances in CF care are more promising than ever, these measures could restrict our community's access to existing therapies as well as new treatments as they become available.
In particular, we are concerned that:
• The legislation would effectively eliminate Medicaid expansion and alter its financing structure in a way that would put coverage of new and innovative treatments at risk. Medicaid provides a critical source of health care coverage for 50 percent of children and one-third of adults with CF. We must preserve this safety net by retaining expanded eligibility and ensuring adequate funding for Medicaid.
• The bills do not support an individual market that works well for people with intensive health care needs, including people with CF. By providing states with funds that could be used for a wide range of activities-including high risk pools, reinsurance, provider payments, and programs to promote access to preventive services-these bills offer no assurance that people with CF will be able to purchase an adequate, affordable plan in the individual insurance market, regardless of their state.
• The legislation inadequately supports young people with high health care needs, by basing financial assistance primarily on age rather than income. This could leave younger individuals with CF without enough support to purchase a plan that covers the breadth of their specialty care. This is particularly important for our community, as 75 percent of people with CF are under the age of 30.
We commend lawmakers for not exposing patients to higher premiums based on their health care status when they have a gap in coverage, as was put forward in other proposals. On behalf of the CF community, we urge members of Congress to protect and address the needs of people with cystic fibrosis, a life-threatening disease. We look forward to working with members of Congress as they continue to refine this legislation and will evaluate any bills through the lens of our policy principles."
