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Keeping up with 10 grandchildren would be a lot for any doting grandma. But for 60-year-old Marci Hughes, it's part of the simple pleasures in life.
"I have 10 grandchildren and I want to see them grow up," Hughes said.
But Hughes is in a fight for her life. She is suffering from non-Hodgkins lymphoma, a type of cancer that develops in the lymphatic system. The cancer was in remission, but it came back in full force last year. This time around, the tumors have been very aggressive, and Hughes has been undergoing chemotherapy treatments for months.
In April, Dr. David Claxton, an oncologist at Hershey Medical Center in Hershey, Pa., told Hughes her only hope for survival was a mini stem-cell transplant, a type of procedure for cancer patients over 55 years of age. A mini stem-cell transplant uses low to normal doses of chemotherapy to allow the patient's immune system to better adapt to the donor stem cells.
But cancer is not the only battle Hughes has been fighting. After meeting with her doctor, the Boalsburg, Pa., woman began battling her health insurance company, HealthAmerica and Health Assurance. The company said it could not cover the $300,000 mini stem-cell transplant because it is an experimental procedure.
Hughes would eventually be approved for coverage, but it took perseverance.
Insurance Company Standoff
Her doctor went to bat on her behalf.
In one of his letters to HealthAmerica and HealthAssurance, Claxton wrote: "There is growing literature supporting the validity of use of this kind of transplant for patients like this ... I would add to this our own local observation for the past couple of years suggesting very dramatic therapeutic responses to this kind of therapy in patients who would be expected otherwise to have progressed and died of their malignancies."
But the company refused to cover the procedure. "I don't know what's going to happen and it's very scary because this is my only chance to live and I don't know what to do," Hughes said after learning the news that her request was initially rejected.
Starting in May, Hughes and her husband, Jack, a professor at Penn State University for more than three decades, began flooding HealthAmerica with letters and phone calls. They appealed the insurance company's decision three times, and three times they were denied.
"I beg you to please have compassion on me," Marci Hughes wrote in one letter.
"Do I have to choose between the life of my lifelong partner or being destitute for my retirement years to pay off the cost?" Jack Hughes wrote in another.
In their letters, the couple also noted that they knew of other insurance companies that were paying for the procedure. They also said HealthAmerica's denials were making the situation even more stressful.
In a video diary of their ordeal made for Good Morning America, the couple pleaded with the insurance company over the phone.
"I can't believe you guys are doing this to me and I mean I'm going to die and nobody cares," Hughes said, sobbing into the phone. "It's just awful. It's like you're just a number. How come nobody cares? If it were your mother, if it was your child, believe me you'd be doing something. But it's me, and I want you to do something for me."
A Little-Known Fact
Adding to the stress: Hughes must make a two-hour drive every few weeks to Hershey Medical Center, where she checks in for five days of chemotherapy.
"Other insurance companies are paying and I don't know why they won't and it's making me very frustrated and it's making me very sad and discouraged and stressed out and that's not good for me," she said. "I'm not supposed to be stressed out when I've got cancer." Marci and Jack Hughes were feeling so discouraged by HealthAmerica's denials that they actually bought a tombstone.
But then their luck started changing. With the help of the Patient Advocate Foundation (www.patientadvocate.org), the Hughes found out something most people don't realize. It is Penn State, Jack's employer, that is responsible for what HealthAmerica decides to cover.
"They negotiate what benefits they are going to include and what they are not going to include," said Nancy Davenport Ennis, founder of the Patient Advocate Foundation. "Whose definition of experimental and investigational will Penn State embrace at the end of the day? If they embrace the scientific community's definition, this will not be experimental and investigational."
And then just over a week ago, Marci Hughes' wish came true. After a direct appeal to the university, Penn State directed HealthAmerica to cover the procedure.
Both Penn State and HealthAmerica and HealthAssurance were contacted for interviews but both declined. They did, however, issue statements.
In a statement to Good Morning America, Penn State said: "Addressing the critical health care needs of employees while still maintaining control over rapidly escalating health insurance costs is a daunting task for any employer. In making the decision to fund treatment for Mrs. Hughes, the University relied on the input of her personal physician, as well as advice from medical experts at Penn State's Milton S. Hershey Medical Center.
"Based on a thorough review of medical literature and other relevant information, and the current state of the proposed treatment program, it was determined that the procedure was a covered procedure as defined in the health plan. Our thoughts are with Mrs. Hughes and we very much hope that the procedure proves to be effective in treating her case."
In a statement to Good Morning America, HealthAmerica and HealthAssuance said: "HealthAssurance's complex case management protocols and programs have been thoroughly tested and have been proven to be effective. As we initially evaluated Mrs. Hughes' health condition and the request for coverage of the stem cell transplant procedure, we undertook a thorough review of relevant medical literature, recently published medical research and additionally sought external, independent review from physicians practicing in this specific field of medicine.
"Subsequently, after further discussions among HealthAssurance, Mrs. Hughes' health plan fiduciary, it was determined that the procedure in question should covered. Mrs. Hughes was notified about this decision on October 10th. We are hopeful that Mrs. Hughes condition will respond to the proposed treatment."
Hughes says she finally feels as if she can concentrate only on getting healthy again.
"The frustration has been lifted off both of us and we are just so excited," she said.
For more information, go to the Patient Advocate Foundation's Web site: www.patientadvocate.org.
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