Caroline Williams found that being diagnosed with a rare form of breast cancer at the age of 26, while unemployed and uninsured, was even more problematic than she had expected.
Concerned about a lump she had found, the 26-year-old Springfield resident walked into Alexandria’s Queen Street Clinic, which serves the medically uninsured, last December. The doctor she saw there did not think the lump was cancerous and wanted to prescribe a round of antibiotics, said Williams. "I was pretty adamant about getting a mammogram, and she gave it to me."
What the test found was a malignant phyllodes tumor, a form of cancer that accounts for less than 1 percent of all breast cancers. Phyllodes tumors are usually benign. Williams was told that the tumor was close to metastasis, when it would enter the bloodstream and spread. As cancerous phyllodes tumors do not respond to chemotherapy, her prognosis after metastasis would have been dire.
Williams said she has since met other young women diagnosed with breast cancer and found that her experience at the clinic was not uncommon, because breast cancer is not expected in women under 40. "There’s a lot that doctors miss because of our age," she said.
WILLIAMS SAID HER MOTHER was ready to sell her house to pay for emergency surgery, when they found the breast cancer center at Anne Arundel Medical Center, which performed the biopsy and two surgeries for about $8,000. Williams and her parents paid out-of-pocket.
However, phyllodes tumors have a high rate of recurrence, she said, so she was advised to get a complete mammogram and ultrasound every six months for the next 10 years. Unable to afford a private insurance plan, especially now that she had a serious pre-existing condition, Williams set about trying to find assistance, to help her cover future mammograms and any further treatment.
She contacted Medicaid and was told that in order to qualify, she would have to have been diagnosed at the Vietnamese Resettlement Association in Falls Church. Curious, she called the association and told the woman who answered the phone that she was concerned about a lump in her breast.
"They told me I was too young," she said, adding that she was told that the woman she needed to speak to was on vacation, and she would have to call back in two weeks. "I couldn’t understand her, for one thing," said Williams. "And the name itself is very misleading. I would never think to call there."
The American Cancer Society sent her an information package that said she would have to be at least 40 to receive Medicaid breast cancer assistance in the state of Virginia.
IT WAS JUNE when Williams was searching online and discovered the Every Woman’s Life program, the Virginia Department of Health program that serves as the gatekeeper for Medicaid breast cancer assistance in the state. On contacting the program, she found that assistance has been available to women 18 and over since shortly before she was diagnosed, and that she would not have qualified for assistance anyway because she was staying with her mother.
"We figure household income," said Beth Ehrensberger, education manager at Every Woman’s Life, explaining that the household income must be less than twice the national poverty line in order to qualify. For a household of two, this means an income of $27,380 per year or less. "Given Northern Virginia’s cost of living, that’s a lot to ask," Ehrensberger said.
She confirmed that the Vietnamese Resettlement Association is the only facility in Fairfax County that offers screening and diagnosis through Every Woman’s Life. "We went out and gave anybody who thought they had the capacity an opportunity," she said, noting that about half the facilities that participate in the program are privately operated. Each is allotted a certain number of screening slots.
"The Vietnamese Resettlement Association has been able to offer services and has done a good job," said Ehrensberger. She added that the association serves women of all nationalities.
As for the change in age requirements, she said this fiscal year the state awarded the program $405,176 to expand the age range it covers. It is the first year the state has offered funding for the program. The rest of the year’s budget — a little more than $2.4 million — comes from the Centers for Disease Control and Prevention.
Every Woman’s Life is a relatively new program. It was launched in the summer of 2001, the year after the federal government passed the Breast and Cervical Cancer Treatment and Prevention Act, which gave states the option to offer breast cancer through Medicaid. If none of this is common knowledge, there is a reason for that: "We don’t think it would be fair to do a mass-media campaign when we can’t serve all the women it would attract," said Ehrensberger. Last fiscal year, about 6,000 women were screened through the program, she said, adding that the census data indicated that something like 30,000 women in Virginia probably could have qualified.
The state funding awarded this fiscal year allowed 1,000 women between 18 and 39 to be seen, "and we were able to fill those slots really, really quickly," said Ehrensberger. She noted that many of the sites that serve the program screen women beyond their allotted funding and take the cost upon themselves.
LIMITING THE NUMBER of women who are diagnosed through Every Woman’s Life limits the number of women who receive cancer treatment through Medicaid, she said, and the program itself also eats the cost of providing extra screenings. The Centers for Disease Control mandates that no more than 40 percent of the funding it gives to the program may be spent on the administrative costs. "We just felt like that was too generous," said Ehrensberger, noting that the program spends about 80 percent of its budget providing services.
"It’s just frustrating that there’s not enough resources to go around," she said. "We’d love to have more. But we’re just so incredibly grateful to the General Assembly for the funding that we got."
Funding levels also dictate eligibility requirements. In neighboring Maryland, Williams’ parents income would not have been taken into account, regardless of whether she lived with them, said Peggy Owens, Chief of Eligibility and Policy in Maryland’s Children’s Health Program. "We would only count her mom’s income if she were under 25," said Owens.
However, to qualify for breast cancer assistance in Maryland, Williams would have had to qualify as disabled to the point that she was unable to maintain "substantial employment" for at least a year, and she could not have had a net income of more than $350 per month, said Owens, noting that the state is running a multimillion dollar deficit.
Virginia State Sen. Jay O’Brien (R-39) pointed out that a lack of funding for prevention and diagnosis "can create greater expenses down the line," while legislators are often caught up in trying to fund treatment.
"I think more money will be spent on these kinds of programs in the future," he said, adding that he hoped the state's recent investment in Every Woman’s Life "will prove to be so worthwhile" that addition funding will be forthcoming.
O’Brien said he planned to do some more research on the program "and see if we can add a budget amendment," although he noted that mental health programs would provide fierce competition for health dollars this year, in the wake of the Virginia Tech shootings.
"I THINK THAT what we’re seeing here is another of the ramifications of Virginia having one the lowest levels of Medicaid coverage in the country," said Del. Vivian Watts (D-39). She noted that the state ranks 44th in the nation in terms of tax burden. "We’re a low-tax state, and that’s one of the trade-offs," she said.
Watts said she expected that not only mental health would overshadow many other health issues this year, but also the growing waiting list of aging parents who need additional care for their disabled children.
Months after her surgery, Williams still had not seen an oncologist, for lack of money. She said she was staying busy looking for ways to encourage research on cancerous phyllodes tumors. She noted that the National Institutes of Health had told her they had "nothing in their system at all" on the subject.
"A lot of people are raising money for cancer," said Williams. "I’d like to figure out how to funnel some of that into phyllodes and other rare forms."