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|July 30 - August 5, 2009
• Read Jeanette’s journal of her experience
Walk through the wrong door, fall through the cracks
Colorado restricts access to Medicaid for women with breast and cervical cancer
by Dana Logan
Before finding a lump in her breast, Jeanette Oxelson was a healthy 63-year-old woman. And like so many people in this country, she was also uninsured. After losing her job and her health coverage when the company she worked for went out of business a few years ago, she went through a few different stages of health-insurance coverage.
First, she was on Cobra. Then, she had personal insurance with a whopping $5,000 deductible and a nearly $400-per-month premium. During that time, she broke her wrist and, since she hadn’t yet met her deductible, was forced to pay the entirety of the $2,500 bill for treatment on top of the $400 each month.
By this point, Jeanette had started her own business and was struggling to make the monthly payments. When she broke her wrist and needed health insurance coverage, it did nothing for her. So, reluctantly, she decided to drop her coverage in order to stay afloat. She signed up instead for the Colorado Indigent Care Program (CICP) at Denver Health so that she would have some limited care available in case of illness.
Unfortunately for her, the next time she needed medical attention was on Nov. 5, 2008, when she found a dime-sized lump in her breast. At that point, she did what anyone would do. She dropped everything and immediately called Denver Health to try to schedule a mammogram. That’s where the red tape began.
“When I called and told them that I had found a lump in my breast, they asked me if I had a primary care physician,” Jeanette explains.
She told them that she didn’t. She hadn’t been to a primary-care physician in years because she couldn’t afford it. They responded by telling her that in order to get a mammogram she had to have a referral from a primary-care physician; she needed an OK from a doctor to get the necessary screening.
“I said, ‘But why do I need an OK? There’s a lump in my breast, I already know that,’” she says.
Denver Health told Jeanette that this was how the system worked. So she scheduled the earliest appointment available. To her dismay, that appointment was a month away, a virtual eternity when you can feel what could be cancer growing inside of you.
Feeling that this was an urgent matter, Jeanette began making phone calls to several clinics affiliated with Denver Health in an attempt to find an earlier appointment. She called every number that she had been given, oftentimes finding that someone would give her a new number to call, and it would be the same place that had given her the initial referral. And around and around she went. After phone calls were placed, messages were left and days were wasted waiting for calls to be returned, each place ultimately gave her the same appointment date.
“I called every single clinic that was affiliated with the Denver Health System to get an earlier appointment, and every single one of them gave me the same date. So there was just no getting around it,” she says.
“I basically had to quit working. I couldn’t go anywhere because I’d call one of the clinics and leave a message and then maybe anywhere from one to two days later, someone would call me back. I was so afraid of not being by the phone because this was so important that I was afraid if they called me and I missed it, I’d end up at the bottom of the list somewhere, and who knows when I’d get an appointment then. So I spent the next two weeks calling all these places. I’d tell them what was going on and they would say, ‘Well, try this number.’ One of them was the original number that I had called that started this whole thing, and another time I got the number for their mobile radiology clinic and they didn’t do mammograms. It was just insane,” she says.
It appeared as though she would just have to wait. But then, Jeanette thought she found a breakthrough when she discovered a place called the Adult Urgent Care Clinic through the Denver Health website.
“I thought, ‘OK. This is urgent, and I’m an adult. You don’t make an appointment. You just go in there.’ And I thought if I could just get somebody to look at it, it’d be OK. By this time — this was two weeks later — the lump was the size of a golf ball, and you could see it through my shirt, through my skin, and I’m terrified. Absolutely terrified,” she says.
“For it to grow that fast, I figured if I waited another two weeks just to get a mammogram, who knows what would happen. So I went to the Adult Urgent Care Clinic, and they told me that because I wasn’t running a temperature and I wasn’t having any pain and I wasn’t having any discharge from my nipples, I was not considered urgent. And to me, once you get to that point, you might as well go find a funeral home,” says Jeanette.
By this point, Jeanette’s husband had had it, too. He’s diabetic and had health insurance through his work, but the couple couldn’t afford to put her on his plan because it was just too expensive to add a family member. Feeling desperate and extremely worried about his wife’s wellbeing, he decided to call his primary-care physician to see what else could possibly be done. Upon hearing of Jeanette’s condition, his doctor was appalled and told him to bring her in. She canceled appointments and moved things around to see her the very next day.
After taking a look, the doctor sent Jeanette across the street to Exempla Lutheran Hospital. Jeanette was told not to park her car, but to use the valet. The doctor called the radiology department and asked them to switch appointments and see Jeanette immediately.
“I’ve never been so relieved in my life,” Jeanette says.
That day she received a mammogram and an ultrasound, and was scheduled for a biopsy for the very next day. By the time she got the biopsy on Nov. 20, her diagnosis was Stage 3 Invasive Ductal Carcinoma, a particularly fast-growing type of breast cancer.
And although Jeanette should have met the income and residency requirements to get assistance from Medicaid for her breast cancer treatment, it turned out that she had made one mistake: she walked through the wrong door in her search for a diagnosis. That’s because in Colorado, where you get a diagnosis for cervical cancer or breast cancer determines your eligibility for Medicaid.
Walk through the wrong door, and you fall through the cracks.
• • •
On Oct. 24, 2000, Congress passed The Breast and Cervical Cancer Prevention and Treatment Act of 2000 (The Treatment Act) as a way to provide Medicaid coverage to uninsured women with breast or cervical cancer who didn’t meet all of Medicaid’s eligibility criteria. As part of the law, Congress gave individual states the option to implement the law either generously or more restrictively.
Under the generous but more expensive option, states can grant Medicaid coverage to anyone who meets the requirements,
regardless of where they were diagnosed. Under the more restrictive option — the one Colorado chose to implement — states can deny coverage to women diagnosed outside a federal cancer-detection program.
In other words, if a woman in Colorado gets her breast or cervical cancer diagnosis from a facility that doesn’t receive specific federal funding, she is ineligible for Medicaid assistance, even if she would have met all eligibility requirements had she gone to a federally funded clinic.
A new report from the U.S. Government Accountability Office (GAO) looks at how restrictive each state is in its handling of Treatment Act funds. The report highlights the fact that Colorado is in the minority for the way it deals with Medicaid eligibility and The Treatment Act. According to the report, Colorado is among 17 states that restrict funding based on the source of a woman’s breast or cervical cancer diagnosis. (Indiana was included in the 17 states, but since the report came out has loosened its restrictions, leaving Colorado among the 16 most restrictive states.)
If Jeanette lived in one of the states with looser restrictions, she would have met all the eligibility requirements to receive Medicaid for her breast cancer treatment. However, since she lives in Colorado, she was left to search for other options to pay for the mammogram, ultrasound, biopsy, lumpectomy, chemotherapy, radiation treatment, and any other treatments associated with her cancer.
Luckily for her, there are a few other resources that attempt to help women who’ve been denied Medicaid. Specifically, Jeanette was directed to Caritas Clinic, which receives financial assistance from Susan G. Komen for the Cure, Denver Affiliate. Through this avenue, her medical costs connected to her cancer have been, and continue to be, taken care of.
But many women aren’t lucky enough to be caught by those safety nets. And the scarce money that Komen Denver and other organizations have to contribute to care should really be set aside for those who wouldn’t be eligible for any other program.
Michele Ostrander, executive director for Komen Denver says, “What it means for the local Komen affiliate is that our grant funds are really designed to fill in the gaps in treatment. And so, if a woman meets all the eligibility for The Treatment Act, she should be able to access that. So what happened with Jeanette is that we’re paying for her treatment, even though there’s a fellow program out there that should be paying for that. And we don’t have enough funds to go around.”
And Lisa Greim, spokesperson for Komen Denver, points out an additional tragedy.
“They’re essentially leaving federal funding on the table,” she says.
That’s because The Treatment Act is an enhancement-matching program, which means that for every dollar the state puts toward the program, the federal government puts in $1.86. The federal funding is available, so long as the state is willing to commit to the program.
But Ostrander points out that the state’s current budget and economy precludes any attempt to get money set aside in the state budget for this purpose. And, she adds, she wouldn’t want to take any money away from other worthy programs, either.
“Last year, before the session started, we worked with the Department of Health Care Policy and Financing — that’s the program that implements Medicaid in Colorado — and initially we had money in the governor’s budget to expand this program,” she says.
“But obviously, with the current economic situation, that was axed from the budget last session. And certainly with our current climate and having to cut more, we’re not going to be able to expand it by pulling money from general funds, and we certainly don’t want to pull money from other programs,” Ostrander explains.
Without that money, Colorado forfeits federal funds that could go to helping the women in Colorado who are being left behind. So Komen Denver decided to do something about the issue. In collaboration with the American Cancer Society and the Breast Cancer Coalition along with other groups, Komen Denver worked on getting House Bill 1164 passed during the recent session of the Colorado legislature.
The bill, sponsored by Rep. Diane Primavera, a cancer survivor, tacks on a $25 fee to breast cancer license plates in Colorado.
Since the bill passed, starting on Oct. 31, 2009, the funds that will be generated by the additional license-plate fee will go directly into a fund that will be held by the Department of Health Care Policy and Financing. Once a sufficient sum is collected, the federal government will match the fund with $1.86 for every dollar collected through the license-plate fee.
“What we were trying to do was create a funding stream that would help expand this without having to depend fully on taxes. The way we’ve established this fund, it can also take private donations, so we’re hoping that we can have funding from a variety of sources to help expand The Treatment Act here in Colorado,” says Ostrander.
And she says that the license plate seemed like a good place to start, in part because none of the money from breast cancer awareness license plates currently goes to breast cancer, but rather goes to the Department of Transportation.
“Although the breast cancer plates that we had in Colorado had raised a great deal of awareness, none of the money was going to breast cancer. It’s a little misleading. People think the money is going to breast cancer, and it’s not,” she says.
Ostrander clarifies that the plates will come with an additional $25 fee because they don’t want to take money away from other programs, including the Department of Transportation, but also reiterates that the $25 fee goes to an enhanced-match program, making the donation matter more than a simple fee. She says that the system will help Colorado to expand The Treatment Act sooner, since the restrictions can’t be loosened until funding is in place.
“The ultimate goal,” says Greim, “is to build up enough of a fund from the surcharge on the license plates that they can then go back to the legislature and say, ‘Here’s the money,’ because the legislature is not going to take state funds from another source to add women to the Medicaid rolls, no matter how unfair it is.”
But in the meantime, women like Jeanette will continue to find themselves in a dire situation: sick, broke and, often, without support.
“Unfortunately, we put women in a tough situation,” says Ostrander. “You’re scared, you’re worried, and then you have to turn around and advocate for yourself on top of that.”
And maybe the worst part about the current situation is that resources do exist, if you know about them, but many women aren’t aware of their options. Jeanette says that in the dozens of phone calls that she made, she was never told about Women’s Wellness Connection, the program that provides breast and cervical cancer screening at no cost to eligible women at more than 120 locations across the state. It was only after she received her diagnosis from the wrong place that she learned she should have gone to a clinic through Women’s Wellness Connection and would have subsequently received Medicaid.
Pat Uris is the program manager of Community Voices for Denver Health and Hospitals, runs the Women’s Mobile Clinic and oversees the Women’s Wellness Connection program at Denver Health. Uris says that the policy in place should have included a mention of the Women’s Wellness Connection.
“I would be concerned that somewhere in the process, some staff member missed telling her that this program was available, that this coverage was available,” she says.
Uris also says that if a woman were to call complaining of a lump in her breast, the first step would be to get her in immediately, regardless of payer source.
“It would concern me if it took a month,” she says.
A month-long wait to see someone concerned Jeanette, too, and that’s what led her to seek a diagnosis elsewhere. If she’d known what the consequences of that decision would be, it’s hard to know what she might have done. On the one hand, she certainly wouldn’t have wanted to wait any longer than she did. On the other hand, if she’d known how important it is to get her diagnosis through Women’s Wellness Connection, she might have felt the need to do so.
The importance lies in the fact that women in Colorado must be screened through the Women’s Wellness Connection in order to qualify for Medicaid through The Treatment Act, since it is the gateway to the clinics funded through the program.
Ostrander advises women who are without insurance to call the Women’s Wellness Connection’s toll-free number (1-888-951-9355) before going anywhere for a mammogram, since that number will direct you to a qualifying clinic and start you off in the right place from the beginning.
“If you don’t have insurance, we encourage you not to self-pay [for a mammogram], but call this number first to determine if you will qualify for Women’s Wellness Connection services. That’s really important because many, many standing mammography programs think they’re helping by reducing the payment or sliding-fee scale. But if the woman is diagnosed, they’re actually doing that woman a disservice by doing the screening,” she says.
For people who do have insurance and do have the ability to help, Ostrander encourages them to purchase the breast cancer license plate, starting Oct. 31, to help support the program.
“Because everybody knows somebody who doesn’t have insurance. The needs are extreme,” says Greim.
Jeanette, who is currently cancer free, but in the middle of a year of chemotherapy and at the beginning of a six-week long radiation treatment to keep the cancer away, says she wants women to know where to go so they don’t end up falling through the cracks.
“I’m talking to anyone who’ll listen,” she says. “I figure, right now, that’s about the only thing I can do, so I’m doing as much of it as I can.”
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