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While much of the diabetes community eagerly anticipates the latest research and treatment, many diagnosed with the disease struggle to gain access to doctors and the most basic supplies because they are poor or uninsured.
Dr. John Messmer sees these patients almost every day. He estimates that thirty percent of his family practice in Pennsylvania are either without insurance, on medical assistance, or under-insured, and twenty percent of those have diabetes.
"They can't afford equipment, medications, or the time to exercise because they're working two jobs to get by." Messmer said. "Even if they have food stamps, no one is teaching them what food to buy."
More than 1.6 million people with diabetes don't have health insurance, say the Centers for Disease Control and Prevention. Almost 4.5 million — nearly one-quarter of all patients diagnosed with the disease — are poor or close to it, but fewer than two million are covered by Medicaid. Many critics, from the health care community to Capitol Hill, say that the president's proposed tax cuts for health insurance will barely budge those statistics.
The situation adds to an already bleak picture of an American epidemic. The number of people with diabetes grows by eight percent each year. Under the current system, their future won't even include test strips, medication, or nutrition counseling, let alone continuous glucose monitors or inhaled insulin. Health care providers and advocates interviewed for this story said that only a health care policy that increases access to health insurance and emphasizes education and prevention can turn the tide.
Such a system might have made a difference for Debbie Tibbs. The 41-year-old working mother from Northern Virginia fits multiple high-risk profiles: She's poor, uninsured, overweight, African-American, and suffered from gestational diabetes prior to her type 2 diagnosis. Diagnosed a decade ago, she neglected her illness until symptoms of complications, including high blood pressure, began six months ago. But by then, she no longer had health insurance and couldn't afford care.
"I don't want to die," she said on a recent morning in the waiting room of her local free clinic.
Insurance Aids and Ills
Dr. Robert A. Berenson is a senior fellow in Health Policy at the Urban Institute who once worked for the Centers for Medicare and Medicaid Services and practiced for twelve years in Washington, D.C. He emphasized that only insurance provides the screening and nutrition counseling necessary to prevent diabetes complications. "People can get treatment for a heart attack, but without insurance they won't get the education to prevent it," Berenson said. "If there's a disease which is a classic example of when prevention makes a difference, this is the one. And insurance makes all the difference. The uninsured may get care, but it could be with old treatments. It's different for well-insured people."
But Anne Weiss, senior program officer for the Robert Wood Johnson Foundation's diabetes initiative, said that regardless of income, barriers exist to accessible, affordable, and adequate health insurance for people with diabetes. The foundation helped pay for a 2005 study by Georgetown University and the American Diabetes Association that exposed serious flaws in America's private and publicly financed health insurance system. The study revealed the following:
The Safety Net
Every Monday, people with diabetes who are poor and uninsured come to the Loudoun Community Free Clinic, located about forty miles outside Washington, D.C. Recently, there was a couple from Bangladesh who spoke very little English; the husband suffers from diabetic eye disease.
There was a Pakistani woman who came with her retired husband and daughter, who are more proficient in English. She "avoids sweets" and takes medication, but doesn't do home glucose testing. There was an Eastern European man who needed referral paperwork for his eye surgery before running off to work so he wouldn't be late. And finally, there was Tibbs, the African-American mom who doesn't want to die, and a handful of others.
Executive Director Lyle Werner said that about a third of the clinic's 3,500 patient visits last fiscal year were from people with diabetes. In this county with the highest median income in the entire country, only four staff members and myriad volunteer doctors, interpreters, and others serve the underprivileged.
Despite donated samples from area doctors, Clinic Coordinator Diane Henzey said, prescriptions eat up a large chunk of the budget, which was close to $5 million last fiscal year. Volunteers do their best to educate patients with a filing cabinet full of handouts from pharmaceutical companies and handouts made in the office. Public health posters adorn the hallway. But they don't have a dietician or diabetes educator. There's often no time for detailed diet analysis or teaching carbohydrate counting. And much of that is beyond the patients' capability or desire, Henzey said.
Few patients practice regular at-home blood glucose testing. Only recently did the clinic receive meters from a company that was willing to offer a major discount on strips (which still require a $7.50 per month contribution from patients). There's no treatment for depression, which often coexists with diabetes.
As the volunteer nurse for the diabetes clinic, Leslie Wright does her best to fill the knowledge gaps. But she's working against cultural and language barriers much of the time, in addition to denial.
There was the woman drinking Red Bull for breakfast because it was advertised as "healthy." And the forty-something father of two from the Middle East who lost forty pounds and was doing well, but then gained it back after incessant comments from his family that he "looked terrible."
"The sight of him losing weight was different than in our culture of being overweight," Wright said. "It was not a good thing. We reoriented him to stay alive to raise his boys, no matter what his family says."
She has found that encouraging more exercise rather than focusing on strict diets has most impact with clinic patients. And small successes are celebrated. "We lost six pounds!" she said with wide eyes as Tibbs steps off the scale.
Tibbs works at an assisted living home, but found herself uninsured and unable to afford care when she recently developed symptoms of complications. She had been visiting the ER for high blood pressure and was eventually referred to the clinic. She takes metformin but doesn't test regularly: only when she feels bad, maybe three times a week-. She said she still eats fried foods, but forgoes white bread for whole grain and eats salads.
"My feet feel like needles," Tibbs said. "I know that's from my sugar because they say that. The doctor says I'm going to die."
A Sick System
Not only does poverty make controlling diabetes more difficult, but doctors observe clinical evidence, and some studies show, a relationship between poverty and an increased risk for developing type 2 diabetes in the first place. The Albert Einstein Healthcare Network, Center for Urban Health Policy and Research in Philadelphia, investigated the relationship between socioeconomic status and diabetes. The 2005 study found that the combination of lower education, income, and occupational status was a risk factor for diagnosed diabetes in women, but that the association was less consistent in men. Messmer said that socioeconomic status often falls in line with low education and skill levels, which also often coexist with high risk factors for type 2 diabetes such as smoking or poor diet.
Many doctors say that only drastic changes in the entire health care system can begin to help these high-risk populations. They blame a flawed health care system that focuses on treatment rather than prevention and education for cases like Tibbs' and say that increasing access to health insurance is only part of fixing a behemoth problem.
Messmer said: "The whole system has to do a 180, and we need to focus on prevention. We as a nation need to get serious about obesity and eating habits. I need to be able to take time with these patients, and under the current structure I'm not paid for time. I'm paid to do something. I get paid to do a coronary bypass, but not sit down and educate a patient about the effects of smoking or not eating right."
Added Berenson: "If you are lucky enough to live in an area with a free clinic, you can get pretty good care. But that's hit or miss. It's not a complete solution, but it's better than nothing. These are just tentative approaches until we get government to play a larger role in the health care system. I'm not talking about a government-run system, but a multi-part system under government auspices….We're years from that."
The Robert Wood Johnson Foundation tries to lead by example. Some of the foundation's more recent work has examined quality of care and how care is delivered, such as the use of less-expensive community health workers to do outreach and basic education. The hope, Weiss said, is that by documenting the benefits of diabetes prevention and different models of providing health care, the government will weave these concepts into health care reform.
"For many people with insurance, it's still not a very good system," she said. "Even if we get every American covered, we still have a lot of work ahead of us. A lot of things that matter with regard to prevention don't end up covered."
It's not hard to find voices who agree with Weiss. When talk turns to how that can be done, it gets tricky. That's because, as many point out, the solution needs to involve legislation.
"Blue Cross/Blue Shield could make the changes, but that's not going to help people covered by Aetna," Messmer said. "The government can help everybody."
Everyone Has a Role
Still, talk on Capitol Hill about health care has gone on for years with no movement in the direction that even politicians across party lines now agree they need to go. Sen. Blanche Lincoln, D-Arkansas, said she's optimistic that action could be within reach. She's hopeful about nonpartisan efforts to improve healthcare quality and access, especially given the impact that healthcare costs have on the economy. Lincoln said she expects some healthcare issues to come up in the Senate Finance Committee, of which she's a member, in the next several months.
"You don't solve a problem of 47 million uninsured with one bill in two days," said Lincoln, who serves on the Diabetes Caucus because of her constituency's large low-income, African-American population, which suffers disproportionately from diabetes. "It's a laborious process of hearings. But I do think we've got an opportunity to do something here. We're at a crisis point….It's got to happen. The longer we wait, the worse it gets. It's hard to get things going. You always get a price tag, but never the savings to government. To me, it's a no-brainer. You've got to invest in prevention."
Though many say legislation must be the first step in solving the health care crisis, health care providers and advocates say cooperation and effort among more than political parties needs to happen, including more pressure on business, such as the fast food and tobacco industries.
"It's going to take government and insurance companies to work on a way to make the system profitable while preventing problems," Messmer said. "But the insurance companies won't see the return on investment right away."
Dr. Raymond Hoare, a retired cardiologist who volunteers at three Northern Virginia free clinics, including Loudoun, doesn't dispute the need for better access or care. But the no-nonsense doctor doesn't hesitate to point out patients' role, regardless of socioeconomic status.
"You put tools in their hands and they either take care of themselves or not," Hoare said. "There are things we don't control, so the medical field becomes largely a failure. We're not as good educators or motivators as we think we are. We know we're sometimes not going to be successful whether you have insurance or not….It's not all an access issue. The care is up to the patients, no matter what the system is."
In the meantime, aside from taking care of themselves and their children and applying legislative pressure, the diabetes community might consider crossing socioeconomic lines to take care of each other. Dee Herman, a board member with the Juvenile Diabetes Research Foundation's Capitol Chapter, and parent of a child with diabetes, envisions intercity outreach efforts by diabetes organizations and hospitals. In such an effort, Herman said, the more privileged diabetes community would use some of the time now spent lobbying or raising money in order to help the less fortunate gain access to information that will help them better manage their disease.
"What's critical is the sharing of information," Herman said. "The doctors can treat you and prescribe insulin, but they're not going to spend the time with you. It's a challenge to get information even when you have insurance and other resources. To me, it's unimaginable for someone with diabetes to not have insurance, but even more so to not have the connection with other people with diabetes or be able to get on the Internet. It can be a very lonely disease."
Although President George W. Bush was praised for acknowledging Americans who don't have health insurance during his recent State of the Union address, reaction to his proposal about how to increase insurance coverage was akin to winter temperatures in Washington.
The feedback so far on the proposal to provide tax cuts for those who purchase coverage suggests that the plan wouldn't benefit people with diabetes.
According to an analysis from the Urban-Brookings Tax Policy Center in Washington, D.C., the plan would improve the market for health insurance but could also reduce insurance coverage, particularly for low-income families and people in poor health.
"The uninsured people who don't pay taxes aren't going to benefit from that at all," said Dr. Robert A. Berenson, a senior fellow in Health Policy at the Urban Institute. "And a diabetic won't get into that market because of medical underwriters' exclusions based on pre-existing conditions. Diabetics aren't going to be helped by a tax incentive to buy insurance when no one will sell it to them."
But, Berenson adds, "Republicans got credit for saving healthcare for killing the Clinton plan, what was called a government takeover of healthcare. Now, healthcare really is a mess….At least there's talk. We didn't have that a decade ago. But most of it is posturing. It's not serious. In the 2008 election, healthcare should be the most important issue."
Sen. Blanche Lincoln, D-Arkansas, who serves on the Diabetes Caucus, didn't think the proposal would help people with diabetes either. She also serves on the Senate Finance Committee, which would have to approve the plan.
"I don't think it gets at the root of the problem," she said. " If anything, it would put a minor dent in the uninsured, which is the big giant gorilla in the room. And it's an incentive for people to get less coverage."