Rare Disease Threatens Local Woman's Life - You Can Help!

ABOUT APS AND BETHANNE’S CURRENT CONDITION
In 2004, 41-year-old BethAnne Lankey of Ross was diagnosed with a little understood autoimmune blood clotting disease called Antiphospholipid Syndrome (APS). APS causes blood clots to form in any artery or vein without provocation. The damage can be devastating, and the disease can be fatal. At the time of her diagnosis, BethAnne was working full time and active with various charities, social activities, sports and friends. She can no longer work, volunteer, or play sports (walking up a flight of stairs is often too taxing). Her health is a full time job now.

The lack of knowledge about APS by the medical community negatively impacts her care. The US has only six centers (none in Pittsburgh) with formalized APS treatment programs, and there is only one center, Northwestern University Medical Center in Chicago, with any research towards a cure.

As a result of APS, BethAnne has lost lung and heart function. Clots have caused cognitive and memory issues as well. Numerous organs have been impacted. BethAnne now has heart failure and recently was told APS may have damaged her kidneys as well. APS is only one of the many conditions BethAnne has; it takes 27 medications and 13 doctors, several ancillary medical professionals, and cardiac rehabilitation to manage her conditions. She is also at a greater risk for a stroke than a 90-year-old man with a previous history of heart attacks and stroke.

TREATMENTS HAVE NOT WORKED
Initially BethAnne was put on Coumadin, the most commonly prescribed blood thinner, but it didn’t stop the clots. Next came Heparin, but that didn’t stop the clots either. Finally she was put on Arixtra, which worked for a while, but eventually it too could not stop the clots.

Her doctors are deeply worried because she is outside the standard treatment for the disease and at present, there is nothing they can do to stop her clots. Remaining treatments are the chemotherapy drug Rituximab and plasmapheresis, which are “band-aid” approaches. BethAnne has already endured a round of Rituximab and she still continued to clot. Plasmapheresis is only good for 2-3 days and would require a dialysis-like procedure several days a week for the rest of her life. These are the only options available to the doctors for treatment.

There is no formal treatment protocol, and there are no drugs designed specifically for the treatment of APS. There is no study currently underway to develop a treatment protocol because the National Institute of Health doesn’t feel there are enough people affected.

STEM CELL TRANSPLANT IS THE LAST HOPE
BethAnne’s doctors have said that her only hope is a blood/bone marrow stem cell transplant done at Northwestern University in Chicago – the only place doing any form of curative treatment. The stem cell transplant is the same type of transplant done for leukemia/lymphoma and other cancers. PA Medical Assistance does not pay for care outside of Pennsylvania or for treatments that are considered experimental; the transplant is both. Her family and friends have already begun working on events to raise the $300,000 needed for the transplant. Before her brothers can even undergo the necessary testing to see if they can be donors, and before BethAnne can undergo the necessary testing to see if her body can withstand the intense chemotherapy and immune suppressive therapy needed to receive the stem cells, $130,000 is needed.

If all goes well and the transplant is a success, BethAnne should begin producing her own healthy cells and be APS free just three weeks later. BethAnne must raise the money as quickly as possible because she needs to remain healthy enough to undergo the procedure. Her lung function is just ten percent above the cutoff limits. Her heart function has also begun to fail; that, too, could eliminate her chances for the transplant.

FINANCES AND INSURANCE SITUATION
When first diagnosed, BethAnne added two part-time jobs to her full-time one to pay for her medications and insurance co-payments. When she was forced to quit all three jobs due to her declining health, she lost her medical insurance. She applied for social security disability income (SSDI), social security income, food stamps and Medical Assistance at the end of 2006. Only food stamps and medical assistance were granted. BethAnne was denied cash assistance because she had exceeded the asset limit by $251. She was denied SSDI and SSI as well. The denial was not unexpected; BethAnne was forewarned that only one in five are approved for SSDI & SSI on the first try. She appealed the decision and just received word that her SSDI has been approved, but it will be 3-6 months before she receives any payment. In the meantime, she depends on her parents, friends and North Hills Community Outreach to help with her expenses.

NORTH HILLS COMMUNITY OUTREACH’S ROLE IN HELPING BETHANNE
BethAnne began volunteering at NHCO in 1999. After her diagnosis, she could no longer volunteer and needed assistance in meeting her basic needs. Since April 2005, NHCO has helped her with employment, legal consultations and advocacy regarding social security disability insurance, food pantry, rental assistance, financial assistance to pay utilities, women’s support group, and the purchase of an affordable car through partner agency Community Auto so that she can get to all of her medical appointments.

NHCO’S EXTREME ADVERSITY FUND
In 2004, when a young, extremely ill woman needed help above and beyond NHCO’s typical crisis assistance, NHCO instituted the Extreme Adversity Fund. BethAnne is the first case since then to be deemed catastrophic enough to warrant help from this Fund.

Donations are needed and will be used to pay for BethAnne’s living expenses now and for the foreseeable future. Covered expenses will include rent, utilities, medications, and travel and accommodations in Chicago for the necessary testing and transplant. Donors may send their tax-deductible gift to NHCO (with “Extreme Adversity” on the memo line), 1975 Ferguson Road, Allison Park, PA 15101. You may also donate online; just be sure to type "extreme adversity" in the comments box.

Donations for the transplant can be sent to Achieva Family Trust, c/o BethAnne Lankey, 711 Bingham Street, Pittsburgh, PA 15203.

THANK YOU for your support!