Voices of the Nation
I called my old friend Patricia the other day. For some reason
she has been on my mind. She has lupus but has never defined herself as a victim
or patient. Her attitude is positive and she cheers people up just be be around her.
But when we exchanged the usual greetings, "How are you?" I was surprised
to hear her update. She agreed to "go
public" for herself and many others in the Medicaid system.
Consider the Case of Patricia Sweets
The Failing Safety Net of Our Publicly Financed
Health Care System
by M. G. Hudson
" I love to laugh a lot. Life is a precious gift - even with
lupus," says Patricia Sweets, artist, teacher, mother, student, caregiver, and
Medi-Cal bureaucracy victim.
"My attitude is gratitude."
As cyclical as El Nino related weather fronts, the issues of our national fees-for-service
health care system are slowly appearing on the national radar screen. Unlike any
other "post industrial" country in the world, we don't consider health
care a basic right. But there is a patchwork quilt system of private and public health
insurance for millions of people. And there are millions more are without any health
care insurance through a job. The self-employed, child care workers, private tutors,
artists, fast food workers, farm workers, nurses aides, seasonal construction workers
most likely have no health insurance linked to their jobs. Like it nor not, health
care in this country is inextricably tied to job benefits or a Medicare or Medicaid
Lupus Foundation of America
Advocates For The Poor And Uninsured
May 2, 2002
For the past two years, the Lupus Foundation of America has urged Congress to appropriate
funds to provide medical services to poor and uninsured people with lupus as authorized
by the Lupus Research & Care Amendments of 2000. Congress passed the legislation
in November 2000 but has yet to earmark funds to implement subtitle B that authorized
grants to support the delivery of medical and social services for lupus patients
and their families.
The Centers for Disease Control and Prevention released a report on May 2nd that
shows a 60% increase in deaths over a twenty-year period resulting from systemic
lupus erythematosus (SLE). The report demonstrates the need for improved public awareness
of lupus, and greater access to medical care by individuals afflicted with the disease.
The CDC report confirms the LFA's long-standing position that lupus is an urgent
national health issue and deserves a coordinated and comprehensive response by the
federal government. Providing funds for lupus education and medical services directed
toward communities with significant African-America populations would help to reduce
the death rate among black women.
The LFA has recommended to Congress that it appropriate a minimum of $30-million
in Fiscal Year 2003, with additional funds appropriated in subsequent years. This
initial funding would allow the Department of Health and Human Services to award
grants for needed medical services in communities most impacted by lupus.
Please write to your U.S. Representative and your United States Senators and urge
them to provide a minimum of $30-million for medical services for poor and uninsured
(and underinsured) people with lupus in Fiscal Year 2003. In addition, urge your
elected officials to vote to provide more funds for lupus medical research sponsored
by the National Institutes of Health, as well as a 15% across-the-board increase
for National Institute of Health.
Isn't there a safety net? Under President Johnson's War on Poverty and Richard
Nixon's social programs, there was an major national committment to consolidate and
standardize various county, state and federal health programs into a real safety
net for the working poor, seniors citizens and the disabled. The federal-state public
health insurance partnership was born.
There were neighborhood, senior and women's health clinics. This did not happen in
a vacuum; there was a mass outcry in the 1960's about the social costs of poverty
and neglected health. Medicare (for people over 65 years of age) and Medicaid (for
younger people in need of public health insurance) became law by an act of Congress.
The federal government makes matching grants to states to finance that state's Medicaid
program. Each state administers it as it sees fit although there are volumes of federal
and state procedures and guidelines to provide access and prevent fraud.
What about the coming state budget crisis? In California where Patricia Sweets
lives, the state Medi-Cal (Medicaid + California health plan ) system is looking
at budget cuts of $758.3 million. The state will lose another $350 million in federal
matching grants. Doctors who accept Medi-Cal patients soon will be reimbursed $16
per patient visit. 30,000 adults waiting to go on the Medi-Cal program will be left
out in the cold. All dental and foot care will end. What does this mean in terms
of the human cost? Do Patricia Sweets and thousands of other poor, ill and/or disabled
adults and children needlessly suffer as a result of recessionary state budget cuts
and the new defense spending economy? Who will really pay the costs for the war on
Over 42 million people are now without privately or publicly financed health
care insurance. When people call to see a doctor, the first thing the appointment
desk clerk asks is not "What is your condition?" but "What insurance
are we billing?" Private insurance or a COBRA (Continuation of Benefits portability
Act) plan may be available if a person has a $600-1000 to spare per month. Savings
are used in a short time. Frequent secondary ailments that could be serious if not
treated are most often excluded. (Beware if you have had a series of sinus infections
or a trick back.) Your Cadillac premiums will help you wonder how good the publicly
-financed health care insurance may be. Soon your savings will be gone and maybe
Ask Patricia Sweets. Patricia, now 61 years of age, was struck with lupus
disease (an auto-immune disorder) in her early forties. It hit pretty hard but she
continued as best she could to raise her son and carry on as an artist and teacher.
But her life became more difficult. She began dealing with the effects of lupus which
eventually affects major organs (like lungs and heart), joints, bones, and circulation,
Like her mother, Patricia has been an artist all of her life. In ceramics, weaving,
sculpture and jewelry her work is widely recognized in the West for its quality and
When I first met her she was the "Golden Dolphin lady". The Golden Dolphin
was her jewelry design shop in the San Diego area. She helped organized local art
shows and events. She was one of the original founders of the Metalsmiths Guild.
She showed in the world-class, juried Laguna Art Show. She also taught the arts.
Like thousands of self-employed, taxpaying artists, Patricia Sweets had no health
insurance. When the lupus began to take its toll on her health and she found she
had to cut back on the physically demanding work, she needed regular medical care.
She had her first introduction to the maze of publicly financed health care when
she sought help at a local community clinic.
Patricia 's lupus was well established by the time she got a diagnosis. The
disease took a toll, including decreasing her earning capacity. Eventually Pat had
to get financial help. She turned to the federal Supplemental Social Security system.
Even with the debilitating effects of lupus, it took yearsof applications
to be certified as eligible. She finally had to appeal twice (no simple process)
to receive some the monthly help. She also was eligible for Medi-Cal, most of which
is now organized on the managed care model. The SSI helped her establish the legal
fact she was officially handicapped by lupus disease.
But Patricia is a fighter, not a whiner. She carried on as best she could. Besides
caring for herself, she began caring for her mother who is ill, blind, and has suffered
recent strokes. Four years ago Pat returned part-time to school to keep her mind
vibrant and to earn a degree. She is two semesters away from a degree in Psychology.
A few months ago, Patricia had bouts of unexplained, fierce back pain. A basic x-ray
showed one fracturing vertebrae, due to a kind of sudden-onset osteoporosis, a complication
associated with lupus. Her doctor wanted a MRI (magnetic resonance imaging ) test,
more accurate and expensive than x-rays. For two months, Medi-Cal has dragged
its feet. No answers, no help, no serious, specific treatment. No MRI approval.
Now a second x-ray is showing 5 vertebrae are fractured. Her rate of fracturing vertebrae
is alarming. It could be reversible with prompt medical treatment.
In extreme pain and dire need for speedy treatment Patricia Sweets has
been lost in the maze of Medi-Cal bureaucracy for over two months. She is currently
wearing a back brace, and uses a supportive walker. She can not bath, sit up, cook,
clean without help. So far, family and friends are filling in. Patricia Sweets needs
an MRI test in order to see what is happening and a chance to try new osteoporosis
reversing drugs ( that may or may not help). (And will Medi-Cal cover the cost of
the prescription?) Also, her doctor is thinking surgery on her back may help. She
would have any surgery at University of California Medical School and Hospital at
San Diego, a teaching hospital. Like most big medical institutions in the "first"
world, UCSD has an MRI machine. If most people, covered under private insurance can
have a MRI for relatively minor bone diagnosis, why can't one of the best public
teaching hospitals in the West make a time available?
She explains her life is now conducted on the telephone, trying to get some Medi-Cal
action on her medical crisis. Why is Medi-Cal acting like Patricia Sweet's case is
a case of sprained toe when in fact it could be life threatening? The looming budget
cuts? Perhaps Medi-Cal rather have two more patients in the nursing home care system
then help her (and indirectly her mother) now. The fact of the case is that once
a person is eligible for medical care under these public health insurance programs,
they are entitled by federal and state law to fair and equal access to medical treatment.
(Maybe Governor Gray Davis will donate a tiny bit of the $12 million dollars spent
to date on his campaign for re-election for medical crisis patients like Patricia
Sweets.) The Medi-Cal budget cuts are not Patricia Sweet's personal responsibility.
She should not be forced to pay with any well-being that she still has. What a waste
for Patricia, her family and friends, and the world. Her's is a vibrant and creative
spirit which never gives up. Her motto is, "My attitude is gratitude."
Her philosophy about life may not extend to Medi-Cal right now.
Medi-Cal and the UCSD Hospital both receive major federal grants. The seeming
violations of state and federal laws may be spread over a wide section of the Medi-Cal
population. How many Patricia Sweets are there? Patricia stands at the tip of the
Medi-Cal iceberg. She is educated, Caucasian and poor. She has friends who are lawyers
and e-publishers. How would she fare if she was even more "invisible" as
poor people often are? Who are their advocates? Is this what we want happening in
the so-called safety net of publicly financed health insurance? How can we let the
people who depend on Medicaid down so hard?
Sorry. We have got an endless war to wage so we can save lives.
Afterward: Sudden Progress!
As I wrote this article on June 12, 2002 , Patricia was on the phone again, as usual,
three times a day for over the last two months. She told the Medi-Cal contact person,
"I am at the end of my rope with this situation. I have been in agony for over
two months. I am getting outside help." Within twenty-four hours, in the late
afternoon of June 13, Patricia had an appointment for the MRI. Why the Medi-Cal office
stopped stone-walling may be another article but medical testing and treatment is
scheduled. At last! --MGH
Links of interest:
Health Care for All - California
Universal Health Care Action Network
Lupus Foundation of America