Californian denied insurance coverage for stem cell treatment for rare condition
© Pacifica Tribune Updated: 07/30/2009 09:05:23 AM PDT
She once tackled gangs, guns, homicides and drugs in San Francisco’s Bayview-Hunters Point. But these days, that sharp attention is refocused to regaining her health after she was struck by a debilitating and life-threatening condition.
It’s a whole different perspective for the very active Alice DiCroce, 43, a San Francisco Police officer and Pacifica, California, resident, who became disabled two years ago and was ultimately diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP). She’s been forced to wait in pain while one insurance company after another has denied her an experimental stem cell treatment at Northwestern University. The stem cell treatment is the only treatment she knows that may put her condition into remission.
An 11-year veteran of the SFPD, DiCroce fell ill two years ago with sudden, excruciating back pain and numbness in her toes. As numbness spread, mostly in her legs, feet and hands, she ultimately received a diagnosis of CIDP.
The disease manifests itself as the loss of the myelin sheath of the peripheral nerves. The cause is due to immune cells attacking the nerves in the body instead of protecting the body from infections. DiCroce doesn’t know how she was stricken, but thinks it may have been her body’s reaction to a case of the shingles or possibly to an insect bite.
When her symptoms were at their worst, she was in agony. She was nearly paralyzed. She couldn’t walk or turn herself over in bed. She felt heart palpitations. Her eyes were so blurry, she was unable to read. She recently regained the ability to read only two months ago. Long-term prednisone use has been the only thing that relieved some of her symptoms but it caused her to gain 50 pounds on her 130-pound frame.
“Last summer I was nearly paralyzed. I couldn’t walk across the living room. I couldn’t breathe because my diaphragm froze. I was in bad pain. Now I can only walk for about 15 minutes before I get an ache. I can’t walk to the car without help. I fell last week trying to get to the car,” she said.
She is reaching the end of a bell curve when her symptoms are not as severe as they once were, but she still has a long way to go before she makes a complete recovery. She’s still in considerable pain and feels weak. She still cannot feel her feet. She often feels dizzy and lightheaded and gets the shakes at night.
Nevertheless, she is able to maintain some limited activity. With her mind as active as ever, she has taken the dedication she once showed on her job and transferred it to the only activity she can manage — working in her garden. With her domestic partner, Sophie Russell, they have cultivated many varieties of tomatoes, zucchini, peas, beans, broccoli, fava beans, spinach, cauliflower, Japanese eggplant, green peppers, artichokes and asparagus.
Once responding to a homicide was the highlight of her day and gardening was something she thought she’d do only after retiring. With no work, however, she stays as busy as she can in the garden of their home. She watches the baby birds play from their perch in a backyard tree, instead of anticipating a bad guy trying to shoot her from his perch around the corner in a crime-riddled neighborhood. She exchanges vegetables with the neighbors, instead of handing someone a cigarette before they get booked into jail.
She chooses what’s ripe for picking every day. Russell does the cooking in their vegetarian household.
“I can’t imagine any better place to heal. For months she wasn’t able to get out of the house,” Russell said.
In better days, they walked their six dogs on Higgins Way and at the beach. Also in better days, DiCroce reported for work at 8 a.m. to begin a full day patroling Bayview-Hunters Point, a job that saw her dealing with homicides, gangs, robberies, domestic violence, guns, drugs and drive-by shootings. She happily spent the last nine out of her 11 years on the SFPD in that district. She is hoping her health will come back so she can return to the work she loves.
“I’m athletic. I feel confident I could rehabilitate myself, but now I can’t run. I have no ankle strength. You need to be in top shape to be on patrol. I want back everything I had. I like being out there. I wouldn’t like a desk job, but I would take it if I had to. We were racing around going from one call to the other. We were pretty active. It was rare to have a day when I was bored. It was perfect for me,” she said.
Northwestern University offers the only clinical trial in the country using high doses of chemotherapy and stem cell transplantation for CIDP. The stem cells are taken from DiCroce’s own body. Other patients have had success with the treatment. It’s expected to put the condition into remission and rebuild the immune system as quickly as possible.
Nevertheless, results vary from patient to patient. Her prognosis?
“A big shrug,” DiCroce said. She believes the treatment offers her the only hope to completely restoring her health.
Blue Shield, which was DiCroce’s insurance carrier up until this month, refused to pay for the treatment at Northwestern, even though Blue Shield does pay for stem cell transplantation for cancer patients, DiCroce said. The cost for the stem cell transplantation alone, which is only part of what is required, is between $250,000 to $300,000 billed to an insurance company, but $100,00 if an individual is paying out of pocket, DiCroce said. DiCroce, or an insurance company, would also have to pay for the chemotherapy and for hospitalization for a month while her body rebuilds its immune system.
DiCroce was too ill in April to attend her appeal hearing of Blue Shield’s decision.
“In response to hundreds of letters being sent in by my supporters, the city called upon a closed session commission meeting to discuss my appeal. Present were San Francisco Health Services, San Francisco Health Commissioners, Blue Shield, my representatives from the San Francisco Police Officers Association and Sophie. During the meeting, the commission tried to put pressure on Blue Shield to cover it. Blue Shield refused and won because the city contracted minimal coverage,” she wrote the Tribune in an email.
After losing that appeal, DiCroce could do nothing but wait until the next open enrollment period when she could choose a new insurance carrier. She switched insurance carriers on July 1.
The new carrier, United Health Care, also denied her, she learned on Monday.
“United Health Care and the city of San Francisco have apparently written in their contract that ‘experimental’ procedures are not covered,” she said. “I will appeal. Actually, Northwestern already is appealing. My doctor there was shocked.”
The appeal process is expected to take up to 30 days; DiCroce is going to wait and see if the decision is reversed. As she has done before, she is telling her friends to write letters on her behalf.
“I’m striking two-fold,” she said. “I’m telling my friends to write letters telling the insurance company to do the right thing. I’m also trying to change the way the city of San Francisco and the San Francisco Health Commission covers employees. I’m going to try and get something that works.”
President Obama’s proposed overhaul of the health care system will take years to implement and will be too late for DiCroce.
“We can only hope that competition makes insurance companies more humane,” she said.
If all else fails, she is considering going to Brazil where there is a stem cell transplantation program for CIDP at a less expensive cost.
Northwestern has agreed to admit her into the program, when she receives insurance approval, because her doctors there believe this treatment will be successful, DiCroce said.
“This condition is very rare, therefore the trial study is very small. All patients have done well in long-term remission, except for two who were elderly,” she said.
Her friends in the police department along with her civilian friends held a fundraiser in the spring and raised $50,000 to assist her with medical care and living expenses. She’s in the police union’s “catastrophic illness program,” where officers donate their sick time and vacation time to her.
“Big hearts and a lot of generosity — it’s helped sustain me. When officers donated their sick time and vacation time to me it pays for my insurance because I haven’t worked in more than a year. I don’t know how I would make it without the support in my life,” she said.
For more information about DiCroce, visit her Web site.
More information on stem cell treatments and therapies around the world can be found here.
By Jane Northrop