Copyright 1999 Newsday, Inc.
Newsday (New York, NY)
November 8, 1999, Monday NASSAU AND SUFFOLK
EDITION
SECTION: NEWS; Page A03
LENGTH: 2250 words
HEADLINE:
'THEY WERE LETTIN HER DIE' / FAMILY SAYS LACK OF INSURANCE COST A LIFE
BYLINE: By Roni Rabin. STAFF WRITER
BODY:
Lung cancer rarely makes a grand
entrance, preferring to announce its presence by scattering cryptic clues-a
chronic cough, a bout of bronchitis, aches and pains, and more bronchitis.
What is remarkable about Donna Huebner's story is that the Bay Shore
woman detected the intruder's arrival at an early stage two winters ago, when
the suspicious mass on her X-ray was the size of a dime and still deemed
operable.
It was to no avail: She had no health
insurance.
In a tragic case that may reflect barriers to care
encountered by other uninsured Americans, a surgeon at the
University Hospital Medical Center at Stony Brook evaluated Huebner, ordered
extensive tests, advised her the mass in her lung was probably cancer and should
be removed-but told her he could not admit her to the hospital for surgery until
she had a Medicaid card in hand.
Huebner had already applied for the
government health plan for the poor and disabled. But for the
next nine months, her Medicaid application languished while Suffolk County
Social Services officials locked horns with the surgeon over the required
paperwork-with Medicaid officials insisting they could not process Huebner's
application until they had a pathology report confirming the presence of lung
cancer, and the doctor, despite their repeated requests, refraining from
performing a biopsy he considered unnecessary. Officials at Stony Brook, a
hospital that reported delivering $ 16 million in uncompensated care last year,
vigorously deny they would ever turn away a patient in need of medical care,
arguing that one in 10 of the hospital's patients is uninsured. But the surgeon,
Dr. Thomas Bilfinger, told Newsday what he had told Huebner, in a conversation
she recorded with his knowledge and consent: "They won't let her in the hospital
with zero , unless she came in through the Emergency Room." The cancer did not
languish. It waited for no one. And while Huebner's Medicaid application went
unprocessed, it flourished and spread.
And it was only when the
situation was hopeless and Huebner was debilitated by metastatic cancer that
Social Services officials deemed her eligible for Medicaid. By then, this mother
of three, who painted snowy landscapes as a hobby and loved chatting with
friends over a cup of tea, was no longer able to work at all and was finally
poor enough to qualify for Medicaid regardless of her medical condition.
By then, it was too late to operate. And earlier this year, on March 1,
Donna Huebner died of complications from end-stage lung cancer. She was 55.
"She was so angry by the end," said Huebner's 25-year-old daughter,
Danielle.
"She cursed out the doctors and she cursed out Medicaid. She
used to say, 'I worked my whole life, and this is the way they treat me?' "It
was like a Catch-22. The doctor said he wouldn't do it without Medicaid, and
Medicaid said they wouldn't approve her without a biopsy from the doctor.
"So basically, she was just dying. They were letting her die," Danielle
Huebner said.
Huebner's tale, documented in a thick file of papers she
left behind when she died, is a personal tragedy, but it also blasts a hole in
the widely held belief that even though 44.3 million Americans have no health
insurance, they can somehow always get access to care when a serious medical
emergency arises.
While Bilfinger blamed Medicaid for the delays in
treatment in Huebner's case, officials with the Suffolk County Department of
Social Services pointed a finger squarely at the doctor.
"He had no
business waiting for Medicaid," said Dr. Norm Elsky, medical director for the
department and the Medicaid Services Division. "He's a physician-he's supposed
to take care of the patient.
"He shouldn't have based his treatment on
Medicaid eligibility," Elsky said.
Bilfinger blamed county officials for
the delays. "Who's paying Stony Brook?" he demanded, saying he was less
concerned about his own fees. "That is an important problem the county doesn't
help Stony Brook." .
Donna Huebner's odyssey beyond the pale of the
medical system began sometime around the winter holiday season of 1997. A
pack-a-day smoker for years, she was used to coughing her way through a string
of recurrent respiratory infections. But this time, something was different.
On Jan. 14, 1998, Huebner, who had been uninsured since her divorce 15
years earlier, visited the Suffolk County Health Department's Brentwood Family
Health Center. A physician's assistant later listed her ailments that day as
"emphysema, probable lung mass, chronic bronchitis," and referred her to
Southside Hospital for a CT scan of the chest.
The procedure two days
later detected a mass in her right lung.
"Findings are consistent with a
carcinoma right upper lobe," the report said.
The next step was a
referral to University Hospital and Medical Center at Stony Brook, where,
according to copies Huebner kept of her medical records, she underwent extensive
pre-operative examinations ordered by Bilfinger.
One procedure that was
never done-and one that came to haunt Huebner later on-was a definitive test,
through either a sputum sample or a biopsy, to confirm the lung cancer diagnosis
and determine the type of cancer. Bilfinger saw no need for a biopsy; he was
already fairly convinced Huebner had cancer.
It was a curious omission,
according to several nationally known lung cancer experts, who said a
pre-operative biopsy is fairly standard procedure in the treatment of lung
cancer, because its results can determine the course of future treatment and may
even rule out the need for surgery.
In his recent telephone interview
with Newsday, Bilfinger said a biopsy was unnecessary. "It was very obvious on
the CT Scan what she had, a mass, something that ought to be removed," he said.
In the same interview, he confirmed that he told Huebner he could not
admit her to Stony Brook as long as she didn't have coverage. "She won't make it
through the door," he said, recalling Huebner's case.
During his
consultation with Huebner, which she had asked to record because she was
anxious, Bilfinger first said she would have to fill out the appropriate
paperwork before being admitted. After she informed him she had already applied
for Medicaid, he told her she had to be approved for the coverage in order to
undergo surgery.
"The hospital's obligation is to treat you as an
emergency patient," Bilfinger told Huebner, whose condition, though urgent, was
not considered a life-threatening emergency.
"They were gracious enough
to have you come over and continue with a doctor" in the Stony Brook outpatient
clinic, Bilfinger said. "But I have to tell you that when you come in the
hospital as an inpatient to have surgery, they want to have proof that you have
Medicaid. And you can't prove to them you have it without the card." Later in
the conversation, he said, "It doesn't bother me, you understand, it's the
hospital that's concerned." It is not clear why Bilfinger made this statement,
and he refused to elaborate.
Stony Brook officials said that the mere
fact Huebner's file was stamped "Medicaid pending" would have satisfied the
hospital's concerns about payment, and that the hospital's financial aid office
worked out a discounted payment plan that required Huebner to pay only $ 5 a
month for her outpatient evaluation.
Though it is true Stony Brook does
not receive funding from Suffolk County to care for uninsured residents, the
hospital does get reimbursed for uncompensated care out of special state and
federal funds.
If anything, it is physicians' incomes that are
short-changed when patients cannot pay their bills, because even though Stony
Brook is a public hospital, most of its staff physicians must generate their
salaries through patient fees, much as physicians in private practice do.
Hospital officials, however, have said Bilfinger has a good record of caring for
the uninsured.
Officials declined to comment on Huebner's case, citing
patient confidentiality and releasing a statement saying that no uninsured
patient requiring medical care is ever turned away from the hospital. "If the
patient has assets and can afford to pay part of the bill, we will set up a
payment schedule," the statement says. And, implying that Huebner may have
chosen to wait for Medicaid eligibility to come through so as to avoid any
personal liability for bills accrued, the statement continues, "If the patient
still prefers to wait for Medicaid, that is the patient's option." For Huebner,
paying her own hospital bills out of pocket wasn't even an option she could
consider. Her income of about $ 1,000 a month barely covered the $ 650-a-month
mortgage, not to mention utilities and groceries. She had the kind of job that
doesn't pay for sick leave-and she knew she was facing a lengthy recuperation
period during which she would have no income at all.
So Huebner waited
to get her Medicaid card. Because her income exceeded the federal poverty level
of $ 592 a month, her only option was to take advantage of less stringent income
guidelines that apply to the disabled. But in order to prove that she was
disabled, Huebner had to prove that she had lung cancer-and she needed a
definitive diagnosis, as determined by a pathology report.
On at least
four occasions between April and August, DSS requested the report, and Huebner
wrote to Bilfinger for help.
On at least two occasions, the surgeon
wrote back to the department of social services on Huebner's behalf, telling
them a biopsy hadn't been done.
On June 19, 1998, he wrote to DSS that
Huebner "most likely has a cancer in her right upper lobe ... We are still
contemplating a resection, however, this has been held up by the fact that her
Medicaid application, apparently, still has not been processed." On Aug. 14,
after yet another request for the pathology report, he wrote, "Indeed, there has
never been a biopsy attempted or performed on Mrs. Donna Huebner. In addition,
we decline any responsibility for delay in her treatment, or the fact that so
much time has evolved that we now have to repeat certain tests now." Meanwhile,
the cancer was growing.
By September, Huebner became increasingly
agitated. Too proud to confide in her three grown children or ask for their
help, she started frantically reaching out to government agencies, randomly
calling the White House comment line, the Health Care Financing Administration
that oversees Medicare and Medicaid programs and the federal Medicaid Hotline.
She even tried to get U.S. Secretary of Health and Human Services Donna Shalala
on the phone.
On Sept. 7, she wrote a heart-wrenching letter to Gov.
George Pataki, penned in an elegant script hand.
"I cannot believe that
after 8 months a determination has not been made on my case," she wrote of her
Medicaid application. "The serious nature of this diagnosis should have
escalated their investigation and determination, not to mention the mental
anguish, not knowing if the damage or growth of the disease has reached
proportions that will render death or leave you with no quality of life at all."
She signed off, "Thank you so much!" In late September, Huebner was having
difficulty breathing, and her family rushed her to Southside Hospital, where she
was admitted. Around the same time, her former boss, Kathy Brown-Cohen, received
a phone call from a Medicaid official.
"They said, 'Is she coming back
to work?' and I said, 'I don't think so; at this point she'll probably die.' And
they said, 'Now that she's unemployed, she'll be approved FOR MEDICAID .'" By
then surgery was impossible, and Medicaid covered the costs of palliative care
and last-ditch efforts at radiation and chemotherapy treatments at Mount Sinai
Medical Center in New York City.
For the next few months, Huebner was in
and out of hospitals, including Stony Brook.
When lucid, she spoke about
how important it was for people to hear what happened to her. "She used to say,
'If this happened to me, how many other people is it happening to?'" her son
Derek said.
From Feb. 9 until March 1, when she died, Huebner was
hospitalized in Southside, battling severe pain and drifting in and out of
consciousness.
Unable to speak because of a tracheotomy, she scribbled
notes to her family.
"I don't sleep at all I get scared," she wrote at
one point.
But even in those bleak days, the spirit and spunk her
friends and family recall surfaced.
"Just put me on the roof rack and
take me home!" she wrote to her children one day.
Another time she
wrote, "Like daddy taught me, Start a day with a smile and a song in your heart
and you'll never have a rotten day." To this day, friends talk about her zest
for life.
"She was one of the most beautiful people you'd want to meet,
inside and out," said her former boss, Brown-Cohen, remembering a friend who
loved to sing and dance the Lindy.
Fran Solero, her next door neighbor
and confidante, recalled a time, just after a snowstorm, when the two of them
settled down on a mound of snow in the middle of the yard and had a tea party.
"We were like two kids,'' she recalled. "We didn't care what we looked
like. We were going to be Thelma and Louise in our old age-without driving off
the canyon." It was a playful side of Huebner that Bilfinger never had a chance
to discover.
Asked if he knew what ever happened to his patient, he
said, "I have no idea what happened to Mrs. Huebner and I don't want to know."
GRAPHIC: 1) Newsday Photo by Dick Kraus - Danielle
Huebner, 25, left, who lost her mother to cancer, is staying with neighbors
Fran, center, and Alex Solero, 22. Photos - 2) Donna Huebner of Bay Shore died
in March. 3) Huebner, with brother-in-law Peter Sebastian and his son Louis. 4)
LOAD-DATE: November 8, 1999 
