American Health Care Act (AHCA) Could Threaten Care of Vasculitis and Other Rare Disease Patients
Newswise — The Vasculitis Foundation (VF) has released a statement affirming its shared position with the National Organization of Rare Diseases (NORD) concerning the American Health Care Act (AHCA).
On Thursday, May 4, 2017, the US House of Representatives passed the American Health Care Act (AHCA). The bill now moves to the US Senate for consideration.
“We are proud to partner with the National Organization of Rare Diseases (NORD), a 260-member organization of rare disease patient advocacy groups, to ensure that Congress enacts legislation that will improve the health and well-being of vasculitis and rare disease patients across the country,” says Karen Hirsch, president of the Vasculitis Foundation.
“This issue is especially relevant because in May, we are celebrating Vasculitis Awareness Month, a month-long campaign to connect, learn and engage the entire vasculitis and autoimmune community about this group of rare autoimmune diseases,” adds Hirsch.
Hirsch acknowleges the legislature is generating concern within the vasculitis community.
"The Vasculitis Foundation and its Board of Directors and staff, understand the serious and direct impact this legislature, if it becomes law, on our patients and loved ones, as well as the extended rare disease community. Via social media, many patients and caregivers have expressed concern and confusion surrounding the AHCA," says Hirsch.
Hirsch asks patients and caregivers to help the Vasculitis Foundation not only raise awareness among friends and family, but also to also be a collective voice heard by national lawmakers.
"We encourage everyone who has been impacted by autoimmune vasculitis--either directly, or indirectly--to learn as much as possible about the American Health Care Act, and to contact their senators about their questions and concerns," says Hirsch.
She adds the Vasculitis Foundation will provide updates on this legislation, as it moves through the Senate working group to the full Senate.
Here are some resources and links to become better educated about the legislation, and to make your voice heard in Washington.
NORD Issues Statement on Passage of the American Health Care Act
https://rarediseases.org/nord-issues-statement-house-passes-american-health-care-act/
Contact your representatives
https://www.senate.gov/general/contact_information/senators_cfm.cfm
American Health Care Reform Act of 2017
https://www.congress.gov/bill/115th-congress/house-bill/1628
About Vasculitis
Vasculitis is the inflammation of the body’s blood vessels and affects men, women, and people of all ages. The cause of vasculitis is usually not known, but is believed to be caused by an irregularity in the immune system. There are many types of vasculitis; some can be so severe that the tissues and organs supplied by the affected vessels don't get enough blood. This shortage of blood can result in organ and tissue damage, even death. According to the Cleveland Clinic, which has long been active in vasculitis research, the prevalence of specific types of vasculitis in the United States is about 3/100,000 population for granulomatosis with polyangiitis (Wegener's granulomatosis), 3/100,000 for polyarteritis nodosa, 26/100,000 for giant cell arteritis, and 1/100,000 for Takayasu arteritis. For just this small sample of selected vasculitides, the combined prevalence is over 30/100,000 population. About 100,000 Americans per year are hospitalized for care of vasculitis, and while its impact is most significant among patients and their families, it also impacts society through its effect on the U.S. workforce and health care system.
About the Vasculitis Foundation
The Vasculitis Foundation is the international organization for people with vasculitis. The VF empowers patients through disease education, raises awareness of vasculitis in the general public and medical community, and funds research to determine the cause, develop more effective treatments, and discover a cure. Since 2001 the VF has funded over $2,000,000 to research the cause and treatment of vasculitis. The Research Program funds studies seeking the cause(s) of vasculitis, more effective treatments and a cure for vasculitis. The VF Medical Consultants are among the world's finest and most experienced doctors who care for patients and conduct research. The Vasculitis Foundation is a registered 501(c)(3) non-profit organization. The VF is committed to improving the lives of current and future patients and is positioned as the definitive resource for patients, family members, medical professionals and researchers seeking information about vasculitis.
For information about vasculitis and the Vasculitis Foundation, please visit www.vasculitisfoundation.org.
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