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Wednesday

 

Hope for Angie

























Angie Delio, 37, listens to Dr. Louisa Lavy, a specialist in neurology and multiple sclerosis for Kootenai Clinic, during an office visit to discuss timeline, medication concerns and testing Wednesday in Coeur d’Alene. Delio, who has been living with multiple sclerosis for 17 years, is planning to travel to Italy later this month to undergo a stem cell operation.

It's a bonus that Angie Delio studied Italian as an undergraduate, because come June 22, she'll be on her way to Florence.

She'll be in a historically rich Tuscan city, surrounded by sights such as the Palazzo Pitti, Boboli Gardens, Michelangelo sculptures and beautiful country vineyards.

She might even be able to see some of it from her hospital room window as she recovers from a stem cell transplant.

"We have no other options," said Delio's neurologist, Dr. Louisa Lavy. "This is the only viable treatment for her."

Delio, 37, of Coeur d'Alene, was diagnosed with relapsing-remitting multiple sclerosis when she was 20, but that hasn't stopped her from becoming a mother, earning her master's in social work and finding a career she loves.

The disease is finally catching up to her. She had six "exacerbations," or periods of relapse, in 2014 alone.

Each exacerbation brings her to her knees. They steal her energy, her eyesight and her ability to function. And it's serious - normal MS patients only experience exacerbations once every few years.

"Angela is the most active MS patient that I have ever seen," Lavy said. "You wouldn't even know it. It's because she has an amazing neurologic reserve. For now. That reserve has run dry. She cannot stand any more relapses ... the relapses are getting more severe, bigger and her recovery rate is taking longer."

A stem cell transplant using her own stem cells and wiping out her immune system is the only thing that Lavy and her MS-trained medical colleagues believe will help Delio so she doesn't completely deteriorate and lose the ability to take care of herself and her 8-year-old son, Kai.

"Physically, I'm exhausted, and I'm scared to death that every day when I wake up I'm not going to be able to see," Delio said. "I'm ready to go and get it done."

Lavy, who attended medical school and completed her neurology residency at the University of Washington, also completed an MS fellowship funded by the National MS Society. During her training, she evaluated patients as part of a study known as HALT-MS, which "is a clinical trial in which we are studying the use of high-dose immunosuppression (chemotherapy) followed by autologous hematopoietic (blood) stem cell transplantation as a treatment for poor-prognosis MS," according to halt-ms.org. She has a firm grasp on Delio's condition and what the repercussions may be if a drastic action isn't taken now.

"She's a single mom taking care of Kai," Lavy said. "What's going to happen to her if she loses the ability to take care of her son? She loses her son. The ramifications of disability are not just the patient but the family, it's the work, it changes your life."

The reason Delio must go to Italy for the procedure is because Idaho insurance will not cover it. Lavy's recommendations, requests and letters of appeal to insurance companies have been denied. While it does come with a hefty $400,000 price tag, Lavy explained that the barrier is bigger than just the cost.

"Angela is just going to continue to decline and decline into a wheelchair, and yet insurance denies it," Lavy said. "Because of that, we actually had to take it out of the States because there has been no stem cell transplant ever approved in the state of Idaho for MS. We appealed it multiple times, took it to the highest level, and then we appealed through Blue Cross, Blue Shield of Idaho, there was an insurance change, I appealed through Regence, both denied, so we had no recourse but to investigate outside of the U.S., unfortunately."

She said Idaho insurance will use poor or older studies and the fact that the procedure is not FDA approved as reasons for denial. She has advocated that Delio move to Washington, but that's not an option.

"They are citing the controversy and citing older studies and other studies that show a not 100 percent response. It works, but they are able to cite that it's investigational because it's not FDA approved. The No. 1 reason is that it's not FDA approved," Lavy said. "The reason for that is that it's not uniform enough. If there were better centers and more uniformity and clinical studies that show good outcome, it would be approved ... the FDA doesn't want to approve something because they are not yet all safe. If you look at the death rate, it's anywhere from nothing to 5 or 10 percent. You can't approve something that's so heterogenous until we as scientists get our act together and are able to show consistency and uniformity of effectiveness and safety. The FDA will approve it. I think it's within 10 years of FDA approval."

Dr. Riccardo Saccardi and his team of experts at the Careggi University have agreed to take Delio's case for a fraction of the price, closer to $60,000. While it has been trying for Lavy and Delio, Lavy said she doesn't want to point fingers at anyone in particular. She said it's a reflection of how America's health care works, or doesn't work, for those who really need it.

"This health care system in our country is broken for patients like Angela," Lavy said. "It works for the vast majority, but it doesn't work for the people who are the most critically ill. You hear all these stories, and we're dealing with this every day."

Lavy is passionate about Delio's case and emotionally shared her perspective as a doctor.

"I work with patients like Angela and it breaks your heart to see," she said, tears beginning to roll down her cheeks. "It's so frustrating you want to quit, but you can't because these are patients who need you, you're like their only lifeline."

Delio said the last thing she wants is to be viewed as a victim or be pitied. She just wants others who suffer from MS to know that hope is out there, even if it is across the Atlantic Ocean.

Story Source: The above story is based on materials provided by CDAPRESS
Note: Materials may be edited for content and length


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