PUBLISHED: 1:56 PM on Wednesday, November 29, 2006
Transplant patient's testimony makes life better for those with disabilities

Courtesy photo
  Dawn Pedersen's testimony about her difficulties with disability insurance helped pass legislation that helps others in similar situations.
When Dawn Pedersen had a liver transplant on June 22, 1993, she knew that she would face many challenges in the years ahead. What she didn't expect was that she would have to choose between being a productive, working member of society and having access to the medications that keep her alive.

Originally from Missoula, Montana, Pedersen was working at a fish cannery in Petersburg, Alaska when she first started suffering from abdominal pain. She was given antibiotics and sent back to work; it wasn't until she returned to Montana when the season ended that she underwent a liver biopsy that would change her life.

"A sample was sent to Mayo Clinic, and they diagnosed severe liver disease," said Pedersen. "At that point, the pain was so severe, it was freaking me out." After arriving in Rochester, Minnesota by train, and spending the night in the Clinic's emergency room, Pedersen was told that she would need a liver transplant. Pedersen was diagnosed with Budd-Chiari syndrome with underlying systemic lupus erythematosus. Budd-Chiari is a rare condition where a clot blocks the hepatic vein and causes congestion. The congestion injures liver cells, eventually causing irreversible liver failure.

Pedersen underwent the transplant operation that summer. "I hit the ground running," she said. "I was out of the hospital in eight days, which they told me was record time."

After her operation, Pedersen's medications cost $1,200 per month, which was covered by Medicare and through private insurance provided by Icicle Seafoods, where Pedersen had worked. When she decided to move back to Petersburg to work the fishing season in 1996, she purchased a COBRA plan (Consolidated Omnibus Budget Reconciliation Act), a federal program that provides continuation of group health coverage for certain people with temporary special needs. When she later moved to Juneau to seek full-time work, she applied for state of Alaska Medicaid in the interim, but found a problem when she became employed and tried to get back on private insurance.

"I got on Medicaid, only to find that I couldn't be on two federal programs at the same time, so I couldn't continue with COBRA," said Pedersen. "Then my Medicaid stopped because I was making too much money at my full-time job. Though I had insurance at my new job, it wouldn't kick in for a year because of my pre-existing condition."

This left Pedersen trying to find a way to pay for her life-sustaining medications each month. "My dad and brother gave me money until they were tapped out, and I begged a lot," said Pedersen. "Luckily, a pharmaceutical manufacturer donated three month's of cyclosporine, and that saved me. I wouldn't have made it without all of this help.

"It would have been much easier for me to stop working, and the thought did cross my mind," she added. "But I was only 28 years old-I wanted to work. I was still a contributing member of society, and I wasn't looking for any handouts. Living on a fixed income at that age was not what I saw myself doing."

Hoping to find a solution, Pedersen approached REACH for help, and they put her in touch with Bob Briggs at the Disability Law Center. At the time, he was working on removing barriers to employment for the state's disabled population. In 1997, Pedersen began testifying in front of the Alaska State Legislature, telling her story to all who would listen.

"It was a little intimidating, but I wanted people to be able to put a face to the situation," she said. "Some meetings were small-just 15 or so people sitting around a table listening to my story. Others were really big-I had to do the whole 'testify with the right hand up' thing."

But her efforts paid off. In 1998, Alaska became the first state to pass legislation authorizing a Medicaid Buy-In program. Now, people meeting the disability requirements can pay a premium on a sliding fee scale based on their income in order to continue receiving disability insurance through Medicaid.

"I was there when Governor Knowles signed the bill at Providence Hospital," said Pedersen. "There were a ton of people there, and I was asked to talk. I don't even know what I said! Then I found out it was on the radio, and I thought, 'Holy crap! I hope I didn't sound like an idiot.'"

Far more likely that the families helped by Alaska's new law would call Pedersen and others who testified on behalf of the bill their saviors. Ironically, the bill came too late to help Pedersen, who is no longer considered disabled and now has insurance that pays part of her medication costs.

"Even though the bill didn't help me, I would absolutely do it again," said Pedersen, who now works full-time for the state as an Eligibility Technician, helping to determine who might be helped by this and other programs. "I know that it has helped a lot of families."