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Nicole's Story

Posted on Sun, Sep. 29, 2002 story:PUB_DESC

Star-Telegram Staff Writer

Thousands of gravely ill patients in the Social Security disability program must wait two years before becoming eligible for Medicare coverage. For many, that's too late.

Sitting in a Denton nightclub on a hot Sunday afternoon, Markita Savage started to cry while telling the story of how brain cancer was killing her friend Nicole Giorgio and turning her into a pauper.

The words caught in Savage's throat, and her voice took on an odd and strained cadence. She talked about how Giorgio lost her health insurance and how bureaucrats shifted blame until no fault seemed to remain. The federal government was making disability payments to her friend, Savage said, but it refused to acknowledge Giorgio's disability when it came to helping with medical expenses.

At first, Giorgio didn't see Savage. She was hidden in a circle of partygoers amid music, laughter and the tinkling of glasses at the club. FOG -- Friends of Giorgio -- was there to engage in a new American tradition: raising money for a middle-class patient who could not pay for essential medical care.

Then Giorgio spotted her friend's troubled face and inched closer. Just when it looked as if Savage would break down completely, Giorgio leaned over and extended her hand, offering to dance with Savage.

Savage smiled and shook her head no, but the hand seemed to insist.

So she placed her hand in Giorgio's, and they shared a light embrace, then began leisurely circling the hardwood dance floor. The two danced slowly and smiled at each other -- two old friends who could not imagine how they would ever say their final goodbyes.

A gap in the system

Health care advocates estimate that thousands of terminally ill Texans are waiting to qualify for Medicare so it can pay their medical bills. Many will die before becoming eligible, leaving their families saddled with debt and their doctors unpaid.

They've fallen into what bureaucrats call a doughnut hole.

Many people with catastrophic illnesses who qualify for Social Security disability income lose any Medicaid coverage they may have. Yet those younger than 65 cannot be covered by Medicare until they have been on the Social Security program for two years.

Few exceptions are made for the terminally ill.

The two-year waiting period was written into law during the early 1970s because legislators wanted Medicare benefits to go only to people with long-term disabilities, said Ken Apfel, commissioner of the Social Security Administration from 1997 to 2001.

The federal government leaves it to the states to pay for the costly medical care of the terminally ill, health care advocates say. But state officials say the problem requires a federal solution.

Many states, including Texas, have created health insurance programs available to disabled people awaiting Medicare coverage.

But the state's program, the Texas Health Insurance Risk Pool, costs patients $200 to $300 a month in premiums.

Most people receiving Social Security disability payments -- like Giorgio -- cannot afford that.

The states and the federal government blame each other for the gap.

"The federal government does not want to spend the money to cover people in this situation ..." said Robin Chandler, an aide to state Rep. Glen Maxey, D-Austin. Chandler has been trying to help Giorgio obtain medical coverage.

"A lot of people think the solution is to shorten the waiting period from two years to six months," she said. "Then people won't have to die while they're waiting to be covered, and people like Nicole won't have to spend their last days hustling for health care."

Giorgio's medical bills grow each day. Her weekly blood tests cost about $1,000 a month. Nutritional supplements cost about $300 a month. Chemotherapy costs about $4,000 a month.

Apfel, now a professor at the Lyndon Baines Johnson School of Public Affairs at the University of Texas at Austin, said he favors ending the waiting period.

"Once a person gets disability payments, they should be entitled to medical benefits," he said.

But the issue is not simple, he said.

"There is a real cost issue, and here we're talking about billions of dollars," Apfel said. "Any law that would eliminate the two-year waiting period would either significantly raise Medicare payroll taxes or it would make the program more fiscally fragile over the long term."

Giorgio and others in her situation would have been better off had they never worked. People who have not held jobs probably do not receive Social Security disability income, so they are eligible for Medicaid.

"It could happen to anyone," said Joel Lazarine, senior staff attorney at the Dallas Legal Hospice, which provides legal advice to the terminally ill. " ... I was shocked when I discovered that a certain group of people who have worked all their lives have worse medical care than people who have never worked at all."

A stunning plight

At her mother's home in Krum in Denton County, Giorgio, 32, has covered the dining-room table with paperwork, turning the room into a makeshift office. She divides her time between seeking new treatment options and figuring out how to pay for them.

Each year, about five of every 100,000 people in the United States are diagnosed with glioblastoma multiforme, the aggressive type of brain cancer afflicting Giorgio. Tumors associated with the condition can double in size every 10 days.

Giorgio's Medicare will not begin until April 2004, long after the doctors expect her to be dead. Doctors say she has a 10 percent chance of surviving the next 12 months. Yet one of her doctors says Giorgio is luckier than others.

"Her surgeon got all the operations done before her Medicaid ran out," said Virginia Stark-Vance, an oncologist in Fort Worth who treats Giorgio.

Friends are stunned by Giorgio's plight, particularly because she toiled for years in low-paying government jobs with little thought of financial reward.

Giorgio worked as a speech pathologist in Denton, Fort Worth and Austin, helping to motivate and organize teachers of deaf students and to secure employment and services for the students.

But her longtime dream was to work for the Peace Corps. In May 2001, after she was accepted as a Peace Corps volunteer, she quit her job with the State School for the Deaf, giving the school ample time to find a replacement for the new school year.

The Peace Corps scheduled Giorgio to leave for Nairobi, Kenya, on Sept. 17. Her assignment was to train Kenyans on how to teach deaf students to communicate.

"I would have been a deaf-education teacher," Giorgio said. "It would have been glorious."

Six days before she was to depart, the terrorist attacks halted U.S. air traffic. Giorgio's trip was rescheduled for Oct. 7.

But in late September, Giorgio began getting headaches.

Her doctors did CT scans, drew spinal fluid and conducted a neurological screen to diagnose what Giorgio described as the worst pain of her life.

On Oct. 4, before the test results were complete, a friend took Giorgio to a clinic because she began vomiting. The clinic called an ambulance, which took Giorgio to Baylor Medical Center at Grapevine. The next day, she was taken by helicopter to Harris Methodist Fort Worth hospital, where she underwent the first of two brain surgeries.

Surgeons removed a tumor about the size of a baseball from the right side of her head. But they didn't remove all the cancerous cells, and the tumor grew back.

In March, Giorgio underwent the second surgery, at Baylor All Saints Medical Center at Fort Worth, to remove part of that tumor. She knows surgery is just a stopgap.

When her white blood cell count is high enough, Giorgio undergoes chemotherapy to try to slow the tumor's growth.

So far, Giorgio can celebrate only temporary victories.

"The tumor is growing again," said her mother, Carol Giorgio. "The prognosis is not good."

Exemptions for others

Nicole Giorgio did not buy extended health insurance from her state job after her resignation because the premiums cost up to $400 a month.

Besides, "she was 32, and she was going to have insurance in three months," Carol Giorgio said. "How many 32-year-olds are going to take those kinds of precautions?"

She turned to Medicaid after she learned that the Peace Corps would not provide medical coverage because she had not become a bona fide volunteer. If she had gotten sick after stepping off the plane in Kenya, the Peace Corps would have covered her, Nicole Giorgio said.

The Peace Corps has declined to comment about Giorgio's situation, but she is still negotiating with the organization. After the cancer was diagnosed, the Peace Corps offered Giorgio an at-home job, but she declined because of her condition.

Medicaid covered Giorgio for six months. But as a condition for receiving it, she was reviewed and approved for Social Security disability income, which pays her $814 a month. After getting the first check, Giorgio learned that she was making too much money to continue receiving Medicaid.

Giorgio offered to give the money back to the Social Security Administration if Medicaid would reinstate her. The answer was no, and now she has no insurance.

Without insurance, patients have fewer medical options. If treatment can be obtained at all, patients usually must wait for doctors and hospitals willing to treat them.

"It's been a balancing act from the beginning," Giorgio said. "If I didn't have to deal with this, I could focus on getting well."

PresbyCare, the charitable arm of Presbyterian Hospital of Dallas, agreed to cover Giorgio's care for six months, she said. After that, she could go to a county hospital if it offered the treatment she needed. But Giorgio knows that the people and institutions that have helped her will grow weary of bearing the financial responsibility.

Medicare's two-year wait carries exemptions for those with end-stage renal disease or Lou Gehrig's disease, also called amyotrophic lateral sclerosis, or ALS.

The exemption for end-stage renal disease came about because many people needing dialysis were reduced to having weekly bake sales to pay for treatment and because others were dying before the public's eyes, said David Warner, a professor at the LBJ School of Public Affairs at UT.

In 2000, a grassroots campaign won the exemption for ALS, a disease in which nerve cells in the brain and spinal cord that control voluntary movement deteriorate. The loss of motor neurons causes muscles to waste away, leading to paralysis.

ALS sufferers and their support association worked for four years to persuade federal lawmakers to grant the exemption, said Steve Gibson, the ALS Association's vice president for governmental relations.

People often live only two to five years after being diagnosed with ALS, Gibson said. Many died before receiving benefits, and that point resonated with Congress.

The campaign also benefited from the huge federal budget surplus and the fact that relatively few people have ALS. About 30,000 people in the United States suffer from the disease at any one time.

"Lawmakers told us we were the perfect size," Gibson said. "If we got too big, it would cost too much money, and people on the Hill wouldn't support us."

The only way out

Just like those with ALS, people like Giorgio need to fight to change the law, say advocates, lobbyists and health care experts. Many others younger than 65 face the Medicare coverage gap, and they could form a constituency, they say.

About half the 1,000 clients of the Dallas Legal Hospice have the same financial problems as Giorgio, Lazarine said.

HIV/AIDS sufferers used to encounter a similar situation, Chandler said, until the Ryan White Fund was established to provide financial assistance and communities came together to help.

"The only way out is to legislate," Lazarine said.

Many of Lazarine's clients do not have the strength to fight the government.

Instead, they seek treatment at county hospitals, where tax dollars fund whatever therapies are available. Most cancer patients who are referred to Lazarine spend the last few weeks of their lives in bed, he said.

Giorgio is different. She has written to almost everyone from President Bush on down. But all the replies have read the same: It's the law, and her only hope is changing it.

Giorgio said she wants new legislation because it will help others. She doubts that any new laws could be enacted soon enough to help her.

Instead of chasing legislation, she says, she'd rather spend time helping deaf children and adults before she reaches the point where she can't do it anymore.

"I miss the energy of them, their fun, that sparkle that happens when you make a connection with them," Giorgio said.

"Most people would have looked at them and said, 'Oh well, they'll never be able to do anything.' But it shouldn't be like that," she said. "I was part of a process that put people in touch with the world, and it was phenomenal."

Mitch Mitchell, (817) 685-3807

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