IN NEW AARDA SURVEY, AUTOIMMUNE DISEASE PATIENTS VOICE TOP CONCERNS, PRIORITIES TO PRESIDENT TRUMP AND FEDERAL AND STATE LEGISLATORS Call for Increased Federal Funding for Autoimmune Disease Research
Newswise — WASHINGTON, DC, MARCH 28, 2017 – With the intense focus of the Trump Administration and Republican leadership in Congress on repealing and replacing the Affordable Care Act (ACA) since the inauguration, a survey conducted by the American Autoimmune Related Diseases Association (AARDA) finds that the vast majority of autoimmune disease patients do not believe that U.S. elected officials, including President Trump as well as other Federal and State elected officials, understand that autoimmunity is a major U.S. health issue. In addition, they voice apprehension over the future of health insurance and what it means for their care, and believe that legislation must be in place to prevent insurance companies from taking medical decisions away from patients’ doctors.
These are among the major findings of a new online survey of autoimmune disease (AD) patients conducted by AARDA, the nation’s only nonprofit organization in the U.S. dedicated to raising awareness and addressing the problem of autoimmunity. AARDA conducted the survey as part of its annual “March is Autoimmune Disease Awareness Month” activities. Capping off its 25th anniversary celebration, AARDA released the findings of the survey of 1,287 AD patients at a national summit held today at the National Press Club in Washington, DC.
Major findings include:● 94 percent of AD patients surveyed agree that “Federal autoimmune disease research is significantly underfunded ($821M) when compared to cancer ($5.4B) and heart disease ($1.7B). Increasing federal funding for autoimmune research should be a top national health care priority for the President and members of Congress.”
● A large majority are concerned that the following areas of healthcare policy will be an issue in the future and nearly all believe these issues should be considered as the ACA is repealed and replaced, including: - Pre-Existing Conditions (75 percent and 91 percent respectively) - High Cost/Co-Pays for Medicine (78 percent and 93 percent respectively) - High Insurance Premiums/Deductibles (76 percent and 92 percent respectively) - Access to Specialists (64 percent and 89 percent respectively) - Narrow Provider Networks (60 percent and 85 percent respectively)
● 89 percent of AD patients surveyed believe that the President and Congress should work together to create legislation that prevents insurance companies from utilizing “non-medical switching,” “step therapy” and other similar practices that take patients’ health care decisions out of the hands of their doctors.
● More than three-quarters of AD patients do not believe that the President of the United States, U.S. Senators and Congressmen, and Local State Elected Officials are aware that:- there are more than 100 known autoimmune diseases (76 percent, 79 percent and 82 percent respectively)- autoimmunity is a category of disease like cancer and heart disease (75 percent, 78 percent and 80 percent respectively)- autoimmune disease represent a major U.S. health issue, impacting 50 million Americans (77 percent, 79 percent, 81 percent respectively)- autoimmune disease is one of the top 10 causes of death for women under 65 (81 percent, 82 percent and 82 percent respectively)- the economic impact of autoimmune disease represents more than $100 billion in annual direct health care costs (77 percent, 79 percent and 80 percent respectively)
“Autoimmune disease patients suffer from a variety of serious, chronic illness that need careful and constant coordinated management, usually by specialists. Their concerns about changes to the ACA or any health care policy moving forward are real since these changes can have devastating impact on their lives,” said Virginia T. Ladd, Founder and Executive Director, AARDA. “As we begin to plan for our next 25 years of work, the survey also shows us that we have much work to do educating those who hold all the proverbial cards about autoimmune disease.”
About the SurveyAARDA conducted the survey online using Survey Monkey and promoted the link through its Facebook page, the Autoimmune Awareness and Education Forum Facebook group and via email to the National Coalition of Autoimmune Patient Groups. The survey was in the field for roughly four weeks from Friday, February 3, 2017 – Wednesday, March 1, 2017. A total of 1,369 responses were received. The six percent of respondents who reported they did not have an autoimmune disease were removed for a final total sample audience of 1,287. About American Autoimmune Related Diseases AssociationCelebrating its 25th anniversary, American Autoimmune Related Diseases Association (AARDA) is the nation's only non-profit organization dedicated to bringing a national focus to autoimmunity as a category of disease and a major women's health issue, and promoting a collaborative research effort in order to find better treatments and a cure for all autoimmune diseases. For more information, please visit www.aarda.org.
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