A health plan that isn't worth keeping

Ashley Leslie of McHenry, Ill., is a fighter. Since 2006, the 21-year-old with an engaging smile and a sideways-pulled cap has survived two bouts of Ewing sarcoma, a rare childhood cancer that strikes the bones and surrounding soft tissues. The first required a 6-inch bone transplant in her arm and a year of chemotherapy. She suffered a relapse when she was 16 and went through more chemotherapy, radiation and, eventually, a stem-cell transplant operation.

It's been nearly four years since her last chemotherapy treatment. She's been cancer-free for nearly five years. That Ashley is alive today is a miracle of modern medicine.

But now, she has another fight on her hands. And it's not just with the aftereffects of her care.

The repeated chemotherapy and radiation permanently scarred her lungs with pulmonary fibrosis. Her lung function is down to 20% and falling. She needs a double-lung transplant.

The price? Her doctors estimate the total costs of the complicated transplantation will come to nearly a quarter million dollars. Her out-of-pocket expenses will reach $145,000, according to her heart-wrenching plea on GoFundMe.com, the crowd-sourcing website where I found her story.

You see, Ashley's insurance policy will cover only $15,000 of the cost of procuring the organs, which she estimated at $100,000. The average cost for the operation to remove and preserve the organs from a deceased donor is more than $90,000, according to a report by Milliman for the government contractor that manages the nation's organ transplantation networks.

Moreover, her insurance company won't pay for the organs' flight to the site where the operation will take place. She has contacted three of the leading transplant centers in the country to take on her high-risk case. Add another $5,000 to her unreimbursed tab.

Is her family's insurance policy typical? I called Debbie Mast, president of the Transplant Financial Coordinators Association in Palo Alto, Calif., to find out. She said Medicare, which covers care for the disabled, will pay 80% of all costs associated with transplantation. Many also qualify for Medicaid benefits for the other 20%.

Private insurers, on the other hand, are “all over the map” when it comes to transplantation coverage for people who don't qualify for Medicare or Medicaid. Some employer-based plans have great coverage. Others, often individual or small-group plans, offer much skimpier benefits. Many have lifetime or annual caps. Some plans, such as Ashley's, set limits on specific procedures that are well below the actual cost.

These limits are typical of the existing individual and small-group insurance plans that most people in those insurance pools have. These are the same policies being canceled across the country because they don't meet the requirements of the Patient Protection and Affordable Care Act. If Illinois, which asked the federal government to run its insurance exchange, goes along with the offer made by President Barack Obama two weeks ago, Ashley's family will be able to keep what they have.

But if Ashley's family decides to buy a plan through the exchange, they won't be discriminated against because of her previous condition. Will transplantation be covered as an essential benefit? “Most seem to cover it, but it's still kind of vague,” Mast said. It will be a state-by-state interpretation of the law as to whether full coverage will be included in the plans.

If Ashley raises the money, there's a good chance she will be able to get a new set of lungs. Last year, there were 1,754 double-lung transplants in the U.S., according to the American Transplant Foundation. There are currently 1,609 people on the waiting list for the operation, while 225 people died waiting for lungs in the past year. In other words, the supply of lungs is falling short, but not by much. A more concerted effort by the medical system to obtain organs from recently deceased patients could easily solve the supply problem.

But that won't solve Ashley's insurance problem. In recent weeks, the media have been filled with complaints from people with canceled individual insurance policies who don't want to pay for the benefits of pregnant women or older adults with chronic illnesses.

Add Ashley Leslie to the list of people they don't want to support.

Follow Merrill Goozner on Twitter: @MHgoozner