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