April 05, 2006
If you're poor and diagnosed with cancer, the prognosis for receiving treatment that doesn't compound the pain of the illness is bleak. For East Enders, geography makes the accessibility to what care there is an even bigger obstacle. Imagine having to take a three and a half-hour bus trip to University Hospital in Stony Brook for daily chemotherapy. Patients who are too sick to handle four transfers often forgo what follow-up care there is. "People are really suffering here," Kathleen Madigan of the American Cancer Society said, adding that some patients too ill to find the care they need "are probably dying."
Madigan was one of a handful of cancer care advocates who spoke at a forum hosted last week by the Suffolk County Legislature's Cancer Resources Commission. County Health Commissioner Dr. Brian Harper led the proceedings, explaining that currently the county provides preventative and primary care to uninsured and underinsured patients. That means county clinics can not only help you keep from getting cancer, they can tell you if you have cancer. From there, however, patients face the daunting task of finding care on their own, aided only by charitable organizations. They often have "nowhere to turn," Dr. Harper said.
The Commission was convened to address barriers to cancer care and disparities among racial and ethnic minority groups and medically underserved populations. Only about a dozen speakers came out for last week's meeting. Dr. Harper expressed regret that few cancer patients attended to share their stories.
Perhaps they couldn't get there. The dearth of transportation to care, most of which is provided in Stony Brook, dominated discussion. One audience member acknowledged that some nonprofit groups will offer transportation assistance. In her case, however, the help was denied because she owns a car. "You may have a car, but you're too sick to drive," she said.
Dr. Harper affirmed that transportation is one of the greatest challenges. In fact, he reported that the county received a $6 million award for AIDS and HIV care, and asked patients how best the money should be spent. Transportation was the single most often mentioned issue. The health department ended up allocating close to a million dollars towards transportation. "Health care is wasted if the patients can't get there," he said.
After the forum, Susan Barry Roden of the South Fork Breast Health Coalition told The Independent that providing free transportation is one of several services her group offers. The help is out there, she maintains; people just don't know how to find it.
Roden's assertion underscored a second need advocates voiced — a single clearinghouse to help patients navigate a severely burdensome system.
Gaps in the system can prove fatal. Jacqueline Wand of the American Cancer Society told the story of a patient who was able to receive treatment for cancer. The treatment resulted in wounds that needed follow-up care. "There was no money for that, and he died last week," she reported.
In Sag Harbor the advocacy organization Fighting Chance does act as a clearinghouse, according to Duncan Darrow. The group has compiled what he called a "Zagat's Guide" to caregivers, and boasts a website that receives 5000 hits a month. Dr. Harper opined that the county might be able to build on Fighting Chance's model.
Eva Roberts of the Suffolk Independent Living Organization spoke of the need for sensitivity towards patients with disabilities. Those with mobility challenges simply can't access traditional healthcare tools, like mammographies. They can't "hop up on the table," and rather than suffer the indignity of impatient medical workers, simply refrain from partaking in preventative screenings. Dr. Harper felt such an obstacle could be addressed through sensitivity training.
Providing in-office accessibility to disabled patients was the sole facet of the struggling health care system Harper did seem to think could be ameliorated easily. He acknowledged that with constant cuts to health care at the federal and state levels, "we're struggling to hold on to what we have." Still, the county wants to see what role it could play in meeting the need of uninsured cancer patients. Providing subsidies to private practice physicians who can't afford to accept Medicaid patients may be one strategy.
For now, comments from the forum will be compiled and a report will be presented to the legislature. Although three legislators are members of the Task Force, last week, none were present for the forum.