Advocacy Alert: Oppose Tax Reform November 27, 2017 by Kylie Karley Advocacy Alert: Your Action Needed Tell your Members of Congress to oppose tax reform provisions that harm individuals and families facing rare or chronic medical conditions Take Action Now Congress is currently working on a comprehensive overhaul of the U.S. tax code. The House has already passed a measure and the Senate hopes to consider its proposal early in December. The goal is for both chambers to pass their own bills before going to a conference to negotiate a final proposal. At this time, both the House and Senate tax reform bills include provisions that would harm those affected by rare and/or chronic medical conditions: House Bill Eliminates the Orphan Drug Tax Credit and provides no new alternative to continue to incentivize and facilitate the development of therapies for rare diseases. Eliminates the Deduction for Medical Expenses which many patients and their families claim to help offset the costs of medical care. Senate Bill Eliminates Affordable Care Act’s individual mandate to purchase insurance and the Congressional Budget Office has estimated that this action will result in 13 million Americans losing health coverage. With fewer Americans (especially healthy individuals) buying into the insurance market, costs for insurance could drastically increase as the market becomes flooded with individuals that use health insurance frequently Drastically restructures the Orphan Drug Tax Credit to make it much less generous and applicable in a way that would drastically reduce rare disease therapy development. As Congress continues to consider tax reform, and which provisions will be included in any final measures, please contact your Senators and House Representative and ask them to oppose provisions undermining the Orphan Drug Tax Credit, the Medical Expense Deduction, and the individual mandate. How To Take Action: Visit www.senate.gov and identify the contact information for your two Senators by selecting your state. Use the contact information for the DC office, which will include a phone number starting with 202 Visit www.house.gov and identify the contact information for your House Representative by entering your zip code in the upper right corner. Call the offices and ask for the Health Legislative Assistant’s voicemail box or e-mail address. Use the script below to leave or send a message. Script for email or phone calls: Dear _______, My name is _________ and I am a constituent from [home town]. As the legislative process for tax reform continues to move forward, please oppose any provisions eliminating or diminishing the Orphan Drug Tax Credit, the Medical Expense Deduction, and the individual mandate to purchase insurance. As an advocate for patients and commonsense tax policy, the aforementioned provisions are essential to maintaining medical innovation and promoting comprehensive care. [Explain a little about your particular situation] Thank you for time and for your consideration of my request. Sincerely, [Name] [Address]
Ask your Senators to vote NO on the revised Senate health reform bill July 17, 2017 by Kylie Karley ADVOCACY ALERT: ACTION REQUIRED Ask your Senators to vote NO on the revised Senate health reform bill The Senate recently released a revised version of its healthcare reform bill entitled The Better Care Reconciliation Act (BCRA). This bill, like the House version, proposes state waivers, continuous coverage penalties, and deep cuts to Medicaid that would harm patients with costly and chronic health conditions. David O. Barbe, M.D., President of the American Medical Association, stated that “the revised bill does not address the key concerns of physicians and patients regarding proposed Medicaid cuts and inadequate subsidies that will result in millions of Americans losing health insurance coverage.” This version of the BCRA adds an amendment from Senator Ted Cruz that would allow insurers to offer plans that do not meet Essential Health Benefits requirements, as long as these insurers offer at least one plan that does. Chris Hansen, President of the American Cancer Society Cancer Action Network, stated that the amendment and the bill as it stands would “leave patients and those with pre-existing conditions paying more for less coverage and would substantially erode the progress our nation has been trying to make in providing affordable, adequate, and meaningful coverage to all Americans.” This bill harms patients with chronic and complex illnesses in the following ways: Allows insurers to offer less comprehensive policies through a provision that allows states to waive the federal mandate on Essential Health Benefits Includes an amendment that would allow insurers to offer low quality health insurance benefits in place of comprehensive benefits under current law Allows states that seek and receive waivers to opt out of limits on patient out-of-pocket costs and annual/lifetime caps Contains a continuous coverage requirement, which would charge a penalty to individuals with a gap in their insurance coverage Ends Medicaid expansion, leaving millions of the most vulnerable individuals without critical care. The Congressional Budget Office (CBO) is anticipated to release its analysis of the bill by Monday, and a vote on the bill could take place anytime before the Congressional recess in August. Take Action: Secure the contact information for your Senators by visiting www.Senate.gov and using the “Find Your Senator” query tool in the upper right corner. Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template below. Politely and occasionally follow up on your request. You should have an expectation that the office will respond to your specific concerns. If you would like to do more, you can request a brief meeting with the staff at your Senators’ local offices (the location office information is on their websites). Template For Emailing Your Senators Dear _______, My name is _________ and I am a constituent from _________. I am also an advocate for (your health condition). I write to urge you to vote NO on the Senate’s healthcare bill. The Senate healthcare bill would: Jeopardize patient access to quality, affordable & available coverage Cut-off health coverage for millions of Americans Bring back annual and lifetime caps on coverage Price people with pre-existing conditions out of the insurance market I write to urge you to maintain stability for chronic disease patients as you and your colleagues consider healthcare reform. It is my hope that you and your colleagues in the Senate will preserve key patient protections and respect the circumstances of those combatting chronic and costly illnesses. Specifically, please ensure any Senate proposal: maintains essential health benefits prohibits pre-existing condition discrimination prohibits lifetime and annual caps on benefits limits out-of-pocket costs for patients in a meaningful way allows young adults to stay on family coverage until they are 26 [Add a paragraph of brief information about your condition. Tell your story.] Patients need a transparent, bipartisan effort to stabilize the insurance market, bring down premiums, and retain the patient protections that are so critical to patients, consumers and their families. We urge the Senate to go back to the drawing board, and work together to find ways to protect patients with serious illness. Thank you for your time and your consideration of this letter. Please tell me how you have responded to my request. Sincerely, [Name] [Address]
Advocacy Alert: Action Required! June 30, 2017 by Kylie Karley Ask your Senators to Vote NO on the Senate Healthcare Repeal Bill Last week, the Senate released their version of health reform legislation entitled The Better Care Reconciliation Act (BCRA). The bill was slated for a vote this week but, after fierce opposition from the public health community, the vote has been postponed until after the July 4th recess. The bill is expected to undergo some changes in order to gain the support of Senators that have thus far withheld support of the measure. The bill, while seeking to reduce insurance premiums and provide coverage options to individuals with high healthcare costs, harms patients in the following ways: Limits care for people with pre-existing conditions by allowing insurers to offer less comprehensive policies through a provision that allows states to waive the federal mandate on essential health benefits. While insurers will still be required to cover individuals with pre-existing conditions, these individuals may not have all their treatments and services covered. Decreases insurance coverage by allowing states to seek and receive waivers to opt out of limits on patient out-of-pocket costs and annual/lifetime caps. Contains a continuous coverage requirement, which would charge a penalty to individuals with a gap in their insurance coverage. Increases costs for older Americans. Insurers would be allowed to charge older Americans five times more than younger Americans for the same coverage. Ends Medicaid expansion, leaving millions of the most vulnerable individuals without critical care. The Congressional Budget Office (CBO) has stated that the BCRA would cause: 15 million more people to be uninsured next year. In ten years, that number would grow to 22 million people uninsured. Patient out-of-pocket expenditures to rise dramatically, especially for people in states that opt for Essential Health Benefits waivers. The prohibitions on annual and lifetime benefit caps could be eliminated in states that opt for Essential Health Benefits waivers. Now is the time to weigh in with your Senators and make sure they oppose the BCRA as currently proposed and make sure they go back to the drawing board and work together to find ways to protect patients with chronic and costly medical conditions. Take Action: Secure the contact information for your Senators by visiting www.Senate.gov and using the “Find Your Senator” query tool in the upper right corner. Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template found here. Politely and occasionally follow up on your request. You should have an expectation that the office will respond to your specific concerns. If you would like to do more, you can request a brief meeting with the staff at your Senators’ local offices (the location office information is on their websites).
Advocacy Alert! Ask Your Senator to Support FSGS Research Funding May 12, 2017 by Kylie Karley Advocacy Alert! Ask Your Senator to Support FSGS Research Funding Ask your Senator to to sign on to Senator Stabenow’s letter requesting that FSGS be eligible for research funding under the Department of Defense’s Peer Reviewed Medical Research Program for fiscal year 2018 Background Each year, the United States Senate crafts an annual Department of Defense (DoD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). In order for a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and in order for them to support a condition-specific request, they need to be educated and asked to do so by their constituents. (You) As a result of grassroots outreach, the Senate has recognized FSGS as a condition eligible for study annually for a number of years. This support allows FSGS researchers to compete for nearly $278 million in federal research funding each year. You can read about FSGS researchers that received funding for projects through this program here. Take Action Secure the contact information for your Senator by visiting www.Senate.gov and using the “Find Your Senator” query tool in the upper left corner of the page. Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template below. If you call, you can use the template as a guide in your conversation. Politely and occasionally follow up on the request. You should have an expectation that the office will respond to your specific concerns. Email Template Dear _______, My name is _________ and I am a constituent from _________. I am also an advocate for the Focal Segmental Glomerulosclerosis (FSGS) community. FSGS is a rare and devastating disease that attacks the kidney’s filtering units (glomeruli), causing serious scarring, which often leads to permanent kidney damage and even failure. FSGS is a leading cause of end-stage renal disease (ESRD), kidney dialysis, and transplantation. FSGS is disabling, potentially fatal, and treatment options remain limited for affected individuals. Please join Senator Debbie Stabenow in requesting that Focal Segmental Glomerulosclerosis (FSGS) be listed as a condition eligible for study through the Department of Defense’s Peer- Reviewed Medical Research Program, and encouraging continued research at the National Institutes of Health (NIH) during consideration of fiscal year (FY) 2018 appropriations through important report language. FSGS is also a leading cause of end-stage renal disease (ESRD), which nearly 30,000 veterans suffer from nationwide. An additional 3,000 veterans are expected to reach ESRD each year with significant disparities among African Americans. In addition, researchers suggest that environmental exposures have yielded new opportunities for investigating FSGS in the military population. More needs to be done to improve our understanding of the impact of FSGS among our military personnel and veterans. Please consider adding your name to the letter by contacting Lorenzo Rubalcava in Senator Debbie Stabenow’s office at Lorenzo_Rubalcava@stabenow.senate.gov or 4-4822. This letter will close on May 18th, 2017. Thank you for your time and your consideration of this letter. Sincerely, [Name] [Address]