A sick woman's odyssey without health insurance

Ruby Spencer has a tumor so large that it makes the slender, 61-year-old widow look, in her words, "five months pregnant."

The "abdominal pelvic complex cystic mass," as the ultrasound report calls it, measures 32 to 35 centimeters - the size of a football - and may be malignant.

Everyone she has seen sent her somewhere else. The emergency room at Temple University Hospital referred her to a city clinic and back to a state welfare office and then sent her home.

She had no insurance.

"We got turned down from everybody I tried," she said this week, in her Logan home, six weeks after learning about the tumor inside her. "I can't wait till I'm 65 to get Medicare. I'll probably be dead by then."

Her experience shows how difficult it can be to get care without insurance. Only after an Inquirer reporter asked for explanations did public agencies involved in her case start to respond, promising help.

Ruby, a homemaker with no work experience, was married for 24 years but has been a widow now for 12. She survives on $23,664 a year - $10,848 from her late husband's pension from the city recreation department, and $12,816 from a Social Security widow's pension.

She has lived in the same rowhouse for 30 years and attended the same church for 35.

She knows she is partly responsible. Insurance would have consumed much of her income, but she did not try to buy it when she was well.

"I didn't think I would get sick," she said.

And she was not seeing a doctor regularly.

Over the summer, she noticed she was getting thick around her middle. It seemed normal. "You get to a certain age, and you start spreading," she said.

But she soon realized something was wrong. She saw an advertisement for Svetlana De John, a physician assistant, and paid $45 for a visit, and then $125 for an ultrasound. The report, dated Sept. 8 and signed by Anthony J. Limberakis, M.D., of Bustleton Radiology, states in bold type: "PHYSICIAN ATTENTION REQUIRED."

"Findings suggest a huge ovarian carcinoma or other benign or malignant neoplasm. CT (scan) of the chest, abdomen, and pelvis as well as gynecologic follow-up are advised."

De John, Ruby said, told her "to go to welfare and get coverage."

On Sept. 11, Ruby and her son, Dennis Spencer, went to the county assistance office in Germantown to apply for medical assistance. They sat for an hour and a half in the busy waiting room and then met with a caseworker.

"Once I gave her my income," Ruby recalled, "she told me I would not be eligible for medical assistance."

In a meeting that lasted a few moments, she said the welfare worker also told her she could apply to adultBasic, a state insurance plan for the working poor. But getting it takes at least a year, and 118,000 Pennsylvanians are on the waiting list.

She said the welfare office worker also told her, in the meantime, "if you have any problems, go to the emergency room."

So Ruby and her son went straight to Temple's ER on Sept. 11. They arrived about 1 p.m.

They sat in the waiting room for seven hours, she said. "I showed the ER intake people the paper from the ultrasound that says I need surgery," she said.

Finally, they were taken into the back of the ER. She was given a hospital gown. A woman inserted a needle into a vein and took her blood.

"I thought she was setting me up for the CT scan," she said.

"Then another lady came in and told the first lady I don't have insurance," Ruby recalled, "and they took the needle right out of my arm."

"The whole vibe just changed," said her son, who has worked for six years in building services at The Inquirer's printing plant in Conshohocken. "The thing was out of her arm. Mom changed back into her clothes, and we just walked out after sitting there all those hours."

"I felt like I was pushed out of there," she said.

She said the ER staff told her she could not afford surgery, that it would be too expensive without insurance.

A Temple resident physician, Roxana Samimi, also signed a form for medical assistance, checked the box indicating Ruby was "temporarily disabled," and wrote under diagnosis: "gyn mass (35 cm); needs surgery."

But Ruby did not return to the welfare office with this form. She had just come from there and figured what was the point.

As she left the hospital, Ruby also said a caseworker "gave me a paper to go to the free city health clinic."

The next day, Ruby did - Health Center No. 10 on Cottman Avenue, one of the city's eight clinics.

"I showed a nurse at the health center the paper from my doctor that said I need surgery and she said we don't do that here," Ruby recalled. "I should apply for adultBasic or welfare."

So she went home in disgust, maybe to die.

She did look into "Special Care" insurance, offered by Blue Cross plans, she said, but "never sent the application in because at the bottom in very small print it says if you have a preexisting medical condition, the coverage will not kick in for a year. So I knew there was no point."

The anxiety and frustration were immense in Ruby's tidy Logan rowhouse last week, where the mantle clock chimed the passing hours and the portrait of her grandsons reminded her of why life is so precious.

"What really pissed me off," she recalled in unusually blunt language, "was how all these gunshot victims can get treated at Temple and they send me back home. I guess I've got to shoot myself in order to be admitted.

"I guess I'm not that crazy."

After receiving a call in early October from Ruby's son, who had seen this series running in the newspaper, The Inquirer referred her to the Pennsylvania Health Law Project, a resource listed in the newspaper.

The nonprofit health-law project helps poor, elderly and disabled residents get health care.

The Inquirer also contacted the institutions she had gone to for help back in early September.

"At the end of the day," said welfare spokeswoman Stacy Witalec, "the response that she got, that's unacceptable. We didn't provide the help to this woman that she may have needed."

Leonardo Cuello, acting director of the health-law project, explained that there was not one program for medical assistance in Pennsylvania, but actually a family of programs - for pregnant women, for children, for the disabled, for the elderly, for women with breast cancer, and more - all with different income limits.

In a technical sense, Cuello explained, Ruby's income of $23,664 a year exceeded the limits for all programs she was eligible for at that moment. But there is one program, Medical Assistance for Workers with Disabilities, MAWD, that she could qualify for if she were working. And work, for this program, has been defined by welfare as something as simple as folding laundry for a few hours a month.

Ruby, had she been advised, could have qualified for MAWD, he said. And Witalec, the welfare spokesman, agreed. But there are 1.9 million Pennsylvanians on Medical Assistance, only 12,220 of them through MAWD. The caseworker at the Germantown office likely never heard of it, Cuello said.

"This case is obviously a fantastic illustration of just how little help people get in navigating the system, and just how much it is needed," Cuello said.

"When she finally does get treatment," he added, "she will be in a much more advanced state of disease, meaning there will be more invasive and expensive interventions needed, and of course her health results will be worse."

Temple University Hospital defended its treatment of Ruby Spencer.

"We didn't fail at all, in no way whatsoever," said John Cacciamani, chief of clinical operations for Temple University Health System. "We did the right thing."

Cacciamani also said her lack of insurance made no difference. "If this was my mother," he said, "I wouldn't admit her."

"When a person shows up in an ER," he said, "they have to be sick enough to have something that makes them unstable and requires them to need immediate attention."

In Ruby's case, he said, "she had a mass. Her labs [blood work] were OK. She's not obstructed. Her blood pressure was good. No fever. There was nothing that made us at all think that she was going to acutely decompensate."

A city clinic should schedule the appropriate tests and surgery, he said.

"If she'd come back to the ER two or three times, saying to us I'm just not getting anywhere, then I'd say we had a higher obligation, ethically, to try and get something done."

He agrees the system is broken and that the outcome - Ruby got no help anywhere - was unacceptable.

"This issue is really about us as a country," he added. "What do we do for people who have the most need? We did the right thing for her in our emergency department. But in our society she should have primary care."

Donald Schwarz, a physician and deputy mayor who oversees the health department and its free clinics, said this when told Ruby's story:

"Oh, my God, if she's not cared for, and she doesn't have care tomorrow, let me know. I will get her care."

Schwarz acknowledged that the city clinic should have done more for Ruby. "We should have been an advocate," he said."We do have an enormous burden. But I'd like to think we can prioritize."

When told that Temple sent Ruby to a city clinic, Schwarz added: "We can't treat a tumor. We don't have surgeons. We do primary care.

"One would expect that a nonprofit charitable institution like a hospital would be able to provide a way to find service for someone like this," he said.

After the newspaper referred Ruby to the health-law project, that organization helped her complete an application for the MAWD program.

She asked her pastor at Greater Harvest Baptist Church in North Philadelphia to write a letter, and he agreed to pay her $100 a month to help clean the church, which she had been doing anyway for years as a volunteer. So she was now employed and disabled and eligible for MAWD.

She submitted the application last week.

Once contacted by the newspaper, welfare officials in Harrisburg took an interest in Ruby's case, and on Monday she was told she had been approved for MAWD - a process that can take 45 days - and will have insurance.

The health-law project last week scheduled her an appointment for Oct. 30 at an outpatient clinic for women's health at Temple for which she does not need insurance. But now she will be covered for any tests and procedures - most likely at Temple.

One final footnote: Two weeks ago, Ruby received a $700 bill for her ER visit from Temple University Physicians, broken down into two charges.

One was for $230, for "emergency department visit," according to the bill. She intends to pay that. She was, after all, seen in the ER, even if she was unsatisfied with the outcome.

The second charge is for $470 for "Incise/Drain Bartholin's Abscess."

She has no idea what that could be but is sure that "nobody drained anything. I'm going to fight that one."

Cacciamani, the head of clinical operations at Temple, replied: "That must have been a mistake."

"She needs to call up our billing office. Sometimes there's paperwork from hell."

The bill was due last Tuesday.

"The last thing I need," Ruby said, "is collection agencies calling me."

Ruby Spencer, 61, has

a football-size tumor in her belly but no health insurance. A physician assistant sent her to

the welfare office where Spencer was told she was ineligible. She went to an emergency room and to a city clinic, but both referred her back to the welfare office. Turned down by everyone, she just went home. No one advocated on her behalf until The Inquirer got involved. The case shows how difficult it can be to navigate

the health system without insurance.EndText

In Pennsylvania

Medical Assistance, go to www.dpw.state.pa and click on Apply for Benefits.

CHIP (Children's Health Insurance Program: 1-800-986-KIDS(5437)

adultBasic: low cost coverage for adults, 1-800-GO-BASIC (462-2742). There's

a waiting list.

Pa. Health Law Project: Free legal services. 1-800-274-3258 staff@phlp.org

In New Jersey

Medical Assistance: 1-800-356-1561

FamilyCare: 1-800-701-0710

Hospital Charity Care: Contact your hospital's business office.

Prescription Drugs: 1-888-793-6765 or www.rx4nj.org

Catastrophic Illness in Children Relief Fund: help with overwhemling bills for children under 18: 1-800-335-3863

Community Health Law Project 1-888-838-3180 or 856-858-9500

SOURCES: Pa. Health Law Project, Community Health Law Project

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