Kidney recipient in a ‘pay or die’ situation

Recently, while the House Commerce Committee in Washington, D.C., was discussing the pros and cons of conserving water with low-flush toilets, Harold Allen was hustling to find money for medications he needs to stay alive. Allen, 65, is a kidney transplant recipient, and the life-sustaining, antirejection drugs he must take — the cost of which Medicare pays only 80 percent — cost almost twice what he gets from Social Security. A sad political reality exists when considering Allen’s plight: The Commerce Committee has had a bill (HR 1115) before it since March 1999 that will solve Allen’s, along with several hundred other people’s, dilemma.

More than 44,000 people are on the waiting list for kidneys, according to statistics from United Network for Organ Sharing, the largest privately operated donor organization in the nation. Last year, 12,166 kidney transplants were performed; 2,295 people died waiting for a kidney. Allen was one of the lucky ones. His son, Terry Allen, donated one of his kidneys to his father three years ago and saved the elder Allen’s life.

Ninety-two percent of patients with End Stage Renal Disease (the technical term for kidney failure), according to a study by the University of Maryland Medical Center, have Medicare as their primary payer. Medicare also takes care of all medications, lab work, and fees associated with the transplant surgery while the patient is in the hospital. The first year the patient receives a transplant, medical costs near $90,000, according to the University of Maryland study, published in May 1999. However, when patients are released, if they do not financially qualify for Medicaid or have private insurance coverage, the costs become astronomical. Even after the initial expenses are covered, ongoing medical costs drop to about $16,000 per year, most of that going toward antirejection drugs — of which 20 percent aren’t covered by Medicare.

Because of a law written more than 20 years ago (Social Security Act 226), Allen spends much of his time trying to figure out how he will pay for the immunosuppression drugs needed to keep him alive. Because of amendments to the law, which limited each patient’s funding to only three years, and because of the costs of these drugs, Medicare will stop paying for Allen’s medication altogether in September, the third anniversary of his transplant. After that, it’s up to Allen to figure out how to get the money.

Allen, who used to be an electrician at Sears but didn’t work long enough to qualify for a pension, has a monthly Social Security income of $900. The two antirejection medications he needs, Neoral and Cellcept, cost nearly $1,500 a month. This doesn’t include the myriad other medications he takes for other health problems, such as diabetes, heart problems, and high blood pressure. Finding a way to pay for his medication forces Allen to work every angle in a medical system that governs him.

Everywhere he goes, Allen carries a brown satchel filled with copies of his medical records, prescriptions, and letters to and from Medicare and Medicaid. The doctors, he says, have been good to him. They always try to give him drug samples, but the humiliation sometimes gets to be too much. Allen, a gentle man who loves to help other people, finds it difficult to ask for help. Tears well up in his eyes as he tells about asking for samples of his medications from his doctors. One month, he says, the Salvation Army paid for those drugs. “They saved me,” Allen says.

Allen has had to use every means of support he could find. “I called St. Luke’s one time about my medication, and they said they were leaving for the day but would leave some samples in a brown paper bag inside the nurses station,” he says. “I don’t like to beg, but this is my life and I want to live.” Allen says he sometimes halves his medication to help make the supply last longer. “Lots of old people do that, you know,” he says.

His medical situation grates at him. Allen is a proud man who owns a small home in the Rosedale neighborhood of Kansas City, Kan. His youngest daughter, Rasheda, transferred from Wichita State University to Park College to be near her father so she could help him more easily. The situation hasn’t been easy for her, either. “I was scared I would come home and find him dead,” says Rasheda, the youngest of Allen’s five children. “That last year before the transplant was awful.”

“Sometimes I would come home from dialysis and could barely make it to the front door. Then I’d have to lean against it to get my strength up enough to open it,” Allen says.

Allen, who went back to school at age 35 to learn electronics, dotes on the child of his second marriage. Rasheda is always there for him, he says. He is proud of all of his children and speaks lovingly of his son Terry, who donated his kidney after Allen’s other daughter, Corrine, a nurse in California, didn’t turn out to be a donor match. Terry works at the Veterans Hospital in Los Angeles on the Drug and Alcohol Council.

“I was down to 120 pounds,” Allen says, who now looks healthy at about 170 pounds but still tires easily. “The doctors had given me three choices: dialysis, a transplant, or death. Well, I didn’t want to live on dialysis. I’d rather have died. I’m not looking for a handout; I just need help with these medications.”

According to the University of Maryland Web site, the cost of kidney transplants has been reduced so much that it is now cheaper to have a transplant than to stay on dialysis. “The break-even point is 2.7 years,” Dr. Eugene J. Schweitzer says on the site. He also says it is more cost-effective to have a transplant, even for the highest risk patients. A transplant operation, including the cost of antirejection medications, saved $27,000 per year over dialysis. Still, transplant recipients, such as Allen, must find ways to pay for the drugs.

Most pharmaceutical companies have an indigent medication program. If they qualify, poor people can receive their drugs free. However, qualifying is difficult — practically requiring the person to be homeless — and patients must pick up their medications at the hospital or a doctor’s office. Most indigent people have limited transportation choices and little cash with which to pay for such transportation.

A program operated through the Douglas Community Center in Kansas City, Kan., will pay for all immunosuppression drugs for kidney patients. Allen is currently participating in the program. However, according to Dr. Eric Aspinwall, who works with the center, program funding is due to end within 12 months.

“This is a voucher program, which is in the form of a grant received for a settlement from a suit that the pharmaceutical companies lost. They were giving bigger discounts to larger drug stores than to individual patients with their own insurance. They weren’t playing by the rules,” Aspinwall says. He also says that because Medicare doesn’t cover medications, “many elderly are stuck” unless they qualify for Medicaid.

Medicaid will cover medicine if the maximum income guidelines are met. Allen doesn’t qualify because he hasn’t met the “spend-down” requirements, which call for a certain amount of out-of-pocket payments for his medications before the program kicks in. Allen, like most elderly people and many government employees administering Medicaid, are confused by the program’s often conflicting policies.

If a patient is lucky enough to live in Missouri, however, he or she may qualify for the Missouri Kidney Program. Meeting the program’s qualifications is based on income. However, the sliding scale used is set higher for kidney patients because of the tremendous cost of the antirejection drugs. Bob Whitlock, executive director of the program, says, “It should be a national program. We have more mission than budget and would like to help more people.”

Currently, the program has around 2,400 patients enrolled at any one time. It pays for all renal-related drugs and, depending on the circumstances, can reimburse some transportation and insurance costs. The medication budget is $8 million and is a line item in Missouri’s state budget. Whitlock also says that it is cheaper to maintain patients on the renal drugs than on dialysis. “But we are the payer of last resort. They come to us when they’ve exhausted all other resources,” he says.

Financial considerations, such as a person’s ability to pay for antirejection drugs, are taken into account when determining transplant recipients. However, the reality is that if the patient cannot afford to pay for the medications after the transplant, the kidney should not be wasted. According to Brenda Brewer, transplant coordinator at St. Luke’s Hospital, a team of advisers, including a physician, social worker, and financial counselor, sits down with the patient and explains the details of the operation and the expense of the medication once Medicare payments stop. If a patient feels he or she cannot pay for the medication after the three-year limit, the operation would not be performed. However, people faced with either receiving a kidney or dying usually don’t worry about how to pay the later costs. Allen says St. Luke’s personnel probably discussed financial matters with him but that he was so sick and scared he paid no attention.

Kansas congressman Dennis Moore and his Missouri counterpart from Kansas City, Karen McCarthy, are co-sponsors of HR 1115, which will extend Medicare coverage of immunosuppressive drugs past the three-year limit now imposed. Congress did raise the limit — to three years and eight months — in December because of the passing of provisions in the federal budget, according to the National Kidney Foundation. That agency has lobbied for years to get Congress’ attention on the issue. However, the extended coverage is for a limited time and, because of the law’s requirements, only a few people qualify. Moore, who has been holding town meetings across the 3rd District in Kansas to get public comment on the cost of prescription drugs, became involved, according to aide Marc Wilson, because of the number of people who contacted him about the kidney transplant issue. Allen was one of those people.

McCarthy believes HR 1115, which has strong bipartisan support — more than 260 co-sponsors — can pass the House. However, it has yet to receive a committee hearing. “Logically, when a bill has as much bipartisan support as this does, it would be reasonable for the (Ways and Means and Commerce) committees to take it up. This bill can save lives,” says McCarthy.

However, McCarthy says, HR 1115 apparently is not a priority in Washington, at least not on the same level as low-flow toilets. “The Commerce Committee took up a day deciding to reverse a prior law, which mandated the flow of water in toilets in order to conserve water,” says McCarthy. “I am a conservationist and I think water conservation is very important. But this bill (HR 1115) will save lives, and what has been accomplished this week on the Hill has been limited to discussion on low-flow toilets.”

When questioned about the length of time HR 1115 has been in committee, Commerce Committee chairman Rep. Thomas Bliley’s aide, Pete Sheffield, says, “The Commerce Committee deals with half the legislation (that goes through the House). Sometimes it’s like finding a needle in a haystack.”

McCarthy is also co-sponsoring legislation that will force drug companies to give seniors the same break in prescription costs as they give to large buyers, such as the Veterans Administration. The legislation will also help transplant patients with the medications they must take. However, until passage of federal legislation, people such as Allen must rely on local or state help.

Brewer says patients who live in Missouri are better off because of the Missouri Kidney Program. The program is unique in the country. Once a patient meets the income guidelines, he or she becomes eligible for medication assistance through statewide pharmacies. The program promotes patient education, which includes classes on dialysis, transplants, diet, and financing.

Because of the Missouri program, Kansas patients are sometimes advised, in a roundabout way, to move to Missouri if they can. Allen says he has been told several times that he would be better off if he could move to Missouri. Kansas has nothing comparable to the Missouri Kidney Program.

However, picking up and moving to a different state isn’t always easy. “The transplant community has been lobbying for years to have Medicare pay for the medications for life,” says Brewer. She adds that patients know they have to pay for the medications after the initial three-year period. “We have to be creative in finding funding for those medications, ” she says.

Once a patient starts dialysis, he or she is in the system and it becomes easy to forget what will happen in three years when it comes to the cost of staying alive. As Allen says, “You are thinking about living, not paying for medicine.”

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