MS Treatment Discovered
Published: 7/6/99
A local nurse on a quest to help herself, thinks she may have found a treatment that can help the hundreds of thousands who suffer from multiple sclerosis.
Elaine DeLack was diagnosed with MS in 1988.
What began as occasional numbness in her left leg, worsened to fatigue that made it a struggle just to get out of bed.
"One time it took me three hours to make that bed," said DeLack. "Pull up the sheets on one side and lay down and take an hour nap, go around the other side and pull it up, that's how fatigued I was."
DeLack was desperate for help.
A retired country doctor suggested she look into an old, almost forgotten remedy.
While researching, DeLack came across some local history that inspired her to develop a treatment that several patients say changed their lives.
In the late 1940's and early 1950's, MS patients came from around the world to St. Joseph Hospital in Tacoma. They wanted treatment from Dr. Hinton Jonez, then known as a pioneer in treating multiple sclerosis.
According to a 1950 McCall's magazine article, Dr. Jonez used an enzyme found in the bloodstream to help patients, who arrived in wheelchairs or beds, walk out the door with a new life.
When Dr. Jonez died suddenly, his theories died with him.
Until now.
A local pharmacist helped DeLack find a way to mimic the enzyme that Dr. Jonez used. She mixed it with a component that increases the enzyme's effectiveness. DeLack convinced her doctor to let her try it on herself.
She kept a journal, tracking how each formula and dosage affected her symptoms.
DeLack and the pharmacist worked together to develop a cream that is applied to a transdermal patch and placed on the skin.
DeLack kept using it on herself, and was amazed by the results.
"For myself, it's given me my life back," she said. "I have absolutely no signs or symptoms of MS as long as I take my medication."
DeLack wondered if it would work for others with MS.
She named her concoction "Procarin" and applied for a patent.
She submitted her research to the Washington Institutional Review Board and got permission to organize a pilot study.
She then began searching for a drug company or doctor willing to help her.
DeLack says because she isn't a researcher or doctor, she wasn't taken seriously.
Finally, Dr. Daniel Nehls, a Tacoma neurosurgeon agreed to work with DeLack.
"I felt there was something there, so I agreed to do a pilot study," said Dr. Nehls.
Dr. Nehls says the ingredients in Procarin can't hurt a patient, and that made him comfortable testing it on volunteers.
He admits he was skeptical about whether Procarin would make a difference.
"I was expecting to do a study on nine or 10 patients and not have much of a reaction and tell Elaine that we tried the study and nothing really happened and it was worth giving it a shot," he said. "But there were enough patients that seemed to have effects that I think that was not the case."
Dr. Nehls says seven out of the nine patients who finished the study gained increased energy and function.
Only two complained of minor side effects: One patient thought the treatment made them drowsy, another said they had trouble sleeping while on the patch.
For some, the results were life-changing.
"My side effects were pretty wonderful," said study participant Jean Campbell. "I can walk again, I can talk again."
Campbell says she noticed a difference within 48 hours of using Procarin. The walker she so heavily depended on now stays in the closet.
"I was able to walk at least two or three football field lengths without using a cane or my walker," she said.
Study Participant Connie Getchman has put her walker away, too.
"Probably for me the difference has mostly been in how I feel," said Getchman. "Before I would lay in bed, there wasn't any real reason to get up because I couldn't do anything anyway."
Getchman can play the piano again, and after more than 20 years of not being able to work, she is now looking for a job.
"If I could have had this even 10 years ago, things would be totally different for me, totally," she said.
Study participant Cathryn Reaugh still needs her wheelchair, but says she no longer needs multiple naps to get through the day. She says her ability to think, write and speak have improved. For her, the results are subtle, but significant.
"Now I want to do more and I want to participate in life whereas before I was ready to just chuck it all and say 'the heck with it'," Reaugh said. "But I'm able now to give back a little bit."
Because of Procarin's apparent effectiveness in the pilot study, DeLack wants to get the treatment approved by the Food and Drug Administration.
That will not be an easy task.
According to F.D.A. spokeswoman Sue Hutchcroft, the average drug approval process takes seven years and 50-million dollars. It requires three phases of rigorous testing, including double-blind placebo tests.
"The testing is designed to see if the product is going to work, and if it is going to be safe for the people," said Hutchcroft.
DeLack will need a research laboratory, pharmaceutical company, or investor to help Procarin go through the approval process.
Several Puget Sound doctors have reviewed DeLack's research and agreed to prescribe Procarin to patients they think could benefit.
Procarin is considered experimental, though, and without F.D.A approval, it isn't covered by insurance.
Several of the study participants have stayed on the Procarin patch, at their own expense, since the study ended. They say they couldn't go back to life without it.
DeLack says Procarin is not a cure for MS, but a treatment. A person would have to consistently take the treatment to benefit.
Right now, the treatment costs between 150 and 250 dollars per month.
DeLack is determined to keep working to make Procarin to available every MS patient who wants it.
"A lot of people have lost all their dreams and everything because of the disease and I hope I can make a difference in that, that I can bring these people back to be able to do anything they want to do," said DeLack.
Probably no one is more anxious for Procarin to be approved by the F.D.A than Sister Anne Charles. While on Procarin for the study, the retired nun says she felt better than she had in years.
"It helped me so much," she said. "It gave me hope and courage."
She says she wasn't tired all the time, and she was able to go out with friends and enjoy her retirement.
She wrote to her order, and asked to stay on Procarin.
Her request was denied because, until insurance covers it, Procarin is too expensive.
"I'm just waiting," Charles said. "I have a lot of hope that it's closer now."
It is closer to being approved, but there are no guarantees.
For now, many people are pinning their hopes on a local nurse with a disease, and a desire to help other people.
"I know how I was before I got on this medication and there were times that I didn't want to live, I didn't want to go on," said DeLack." Now I am myself again, I love my life."
For more information, you may contact Elaine DeLack at 360-654-0448 or send her an e-mail message at medelack(AT)email.msn.com
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