A Mount Airy woman was among 11 Lupus patients from North Carolina who traveled to Washington, D.C., recently to advocate for more funding for the National Institutes of Health.
Barbi Manchester, who was diagnosed with Lupus six years ago, spent June 24 and 25 speaking to four United States legislators from North Carolina and their assistants about the request for more funding for NIH and the research it does, and to request the senators to sponsor the Patients’ Access to Treatments Act (PATA) and the members of the House of Representatives co-sponsorship of PATA.
“I met with Sen. Kay Hagan and her assistant Karen Wade, Sen. Richard Burr and his assistant Margaret Coulter, Rep. Howard Coble and his assistant Austen Shearer and Rep. Robert Pittenger and his assistant Michelle Jelnicky,” said Manchester.
“We had over 176 meetings with congressional offices, with 220 people representing 29 states and our online activists came out in force with 3,503 emails and calls to congressional offices,” she said.
Joining Manchester from North Carolina were Christine John-Fuller, president and CEO of the Lupus Foundation of America North Carolina chapter, Vicki Addison, Jeanette Burns, Nikeita Grady, Dana Horner, Latasha Isler, Tameka Joyner, Lynn Manchester, Kristin Mart and Tami Richardson.
Manchester said the Lupus advocates requested Congress provide $32 billion for NIH in fiscal year 2014 to be used for lupus research.
Talking points for the meetings with the legislators include one Manchester highlighted as stunning. “Lupus annually costs the nation an estimated $31.4 billion in direct and indirect expenditures,” she said. “And even with insurance, the estimated average annual cost of lupus for patients ranges from $20,924 to $62,651.”
NIH is the largest financial supporter of research for lupus, and that is why the funding is requested to go to that agency.
As far as PATA, the lupus advocates asked legislators for “support in addressing the discriminatory insurance practice of specialty tiering and co-insurance. … PATA seeks to limit cost-sharing requirements applicable to medications in a specialty tier (typically Tier IV or higher) to the dollar amount applicable to drugs in a non-preferred brand drug tier (typically Tier III) enabling patient access to treatments, reduce disability, and constrain health care costs,” according to the formal request presented.
According to the Lupus Foundation of America, “Lupus is a complex disease that is hard to define. It strikes without warning, affects each person differently, and has no known causes or cure. Symptoms can be severe and highly unpredictable and can damage any organ or tissues, from the skin or joints to the heart or kidneys. While lupus can be disabling and potentially fatal, in many cases the most serious health effects can be managed through aggressive medical treatment and lifestyle changes.”
Local fundraisers, events
Several local fundraisers and events are planned for August and September to bring awareness for lupus and to raise money toward research.
The first of those events will be a Kick-It for Lupus event on Aug. 23. For $1 per kick, people can kick field goals during half time at the Mount Airy High School football game. The money will go to the Lupus Foundation of American for research.
The following day, Aug. 24, will be the third annual Mayberry’s Butterfly Walk for Lupus, with registration starting at 9 a.m. and the walk at 10 a.m. at Mount Airy High School.
The Surry County Wings and a Prayer Lupus Support Group will begin meeting Sept. 7 at 11 a.m. at Pro Health Center off of U.S. 52 North. Manchester is the coordinator of the group, which will offer support for Lupus patients and their families and friends.
On Sept. 13 from 4 to 8 p.m., Kids Kick Lupus Carnival will be held at Central Methodist Child Care Center on North Main Street. The event will feature carnival games, hot dogs and jumpers.
The second annual Dinner and Music to Kick Lupus will be held Sept. 20 at First Baptist Church on Main Street, Mount Airy. It will include a hot dog dinner with all the fixings, homemade desserts and gospel and bluegrass bands.
For more information on the support group or any of the upcoming events, Manchester can be reached at firstname.lastname@example.org.
Reach Wendy Byerly Wood at email@example.com or at 719-1923.