When you deal with insurance companies who refuse to pay for treatments, emotions and money issues can get tangled and painful. Therefore, it is prudent to have strategies for dealing with the problem before you and your loved ones are in a stressed situation.
Three panelists offered pointers in how to deal with insurance companies at the CFRI meeting held at the CFRI office on May 24. All of their messages echoed these themes:
When Pulmozyme was approved by the FDA early this year, it was prescribed for Lori Kipp, the daughter of Norma and Bill Kipp of Monterey. They had a Blue Cross PPO (preferred provider organization) policy.
In early January, Norma sent a prescription request for Pulmozyme to her insurance company's mail order pharmacy service. Pulmozyme retails for about $1600 a month (two doses per day), but costs much, much less through the Blue Cross mail order service. She received a 2-month supply of the drug, but was told that, effective Jan. 1, the drug would no longer be available through mail order. It occurred to her that they had first filled the prescription, then changed the rule.
"I decided I needed more ammunition," Norma said. Through the Department of Corporations--which oversees the Department of Insurance--she learned that insurance companies are required to notify clients of any changes in policy 30 days in advance of those changes. After she informed her insurance carriers that she was aware of the insurance code, they granted an exception for one year if Lori's doctor provided documentation confirming medical need, and agreed that the exception could be renewed. Norma got a fax in writing confirming the agreement.
"Basically, you've got to know your rights. The insurance company is not going to do your research for you," Norma concludes.
"I hate to be negative but it is still very difficult to obtain insurance as a single person in business," said Tom Henderson, broker and owner of an insurance agency. In California, however, a new state law makes insurance more affordable for businesses with five or more employees using organizations called a HIPC (health insurance purchasing cooperative). Some of the larger companies (but not Blue Cross) are selling insurance to HIPCs at rates only 120% of the average. Thus, an HIPC can save insurance bills for a small business. And pre-existing conditions, even CF, are covered. "Hillary Clinton's plan is putting pressure on insurance companies," Tom said, explaining why insurance companies offer coverage through HIPCs.
As one who sells insurance, Tom is often an advocate for his customers, though he is limited in what he can do. He says that a PPO is a real plus over an HMO (health maintenance organization), because an HMO is not required to provide a CF specialist.
Lorin Fink told the story of his daughter's birth, which was covered by a local HMO. Like ten percent of babies with CF, Alanah Fink was born with meconium ileum and needed immediate surgery. The HMO paid the bills. "They were great, but they had no choice," says Lorin.
When Alanah was three years old, she experienced severe stomach cramps. Her parents took her to the hospital that the HMO was willing to pay for, though it did not specialize in treating CF. There she was fed food, because the proper treatment--fasting or abstaining from food--was not allowed by the hospital, and this caused her constant pain for 48 hours. After consulting with their doctor, her parents checked Alanah out of the first hospital and took her to Stanford Medical Center. The HMO would not pay for her to be treated at Children's Hospital at Stanford.
After that experience, the Finks switched insurance to a more expensive plan through Lorin's work at Lockheed, one that would give them coverage at the CF center of their choice. The moral of Lorin's story: If you have CF or an expensive disease, go for the expensive insurance!
The national debate on health care has real implications for the CF community. During the panel discussion, people said that under managed care, deluxe, state-of-the-art care will not be available for everyone who wishes it because that ideal is too expensive. Many expressed admiration for Oregon's state plan which ranks medical procedures by effectiveness and covers the amount the state can afford.
Everyone commended Clinton for putting the issue on the national agenda. Support for Clinton's health plan was cautiously expressed, though people were concerned that access to CF centers developed by the CF Foundation would have to be guaranteed to people with CF. The merits of a single-payer plan were debated. A new single-payer plan on the California ballot this fall was mentioned as worthy of support. Marion Rojas, a 56- year old with CF, pointed out that CF adults in the U.S. are unique in the developed world in having to worry about access to health care; adults in Europe, Australia and Canada have health care as a right. "If we had open borders, I would go to the Netherlands for my treatment," Marion said. Their clinical care is the best in the world."
Contact the CFRI office to purchase a video of this entire meeting for $10 to purchase or to rent it for $5.
If you have a question about insurance coverage, especially if payment was denied, follow this procedure to document it:
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