Negating the stigma associated with certain diseases

Every day, Norman S. Miller, MD, an attending physician with the addiction unit at St. Lawrence Health System in Lansing, Mich., is faced with patients who are at the end of their rope.

The shame of their drug addiction and alcoholism means that they have put off seeking treatment as long as possible. In the process, they have destroyed their social support network, and many have comorbidities connected to their addiction.

"I tell them they have a disease, and they're not bad people," said Dr. Miller, who is also professor of psychiatry and medicine with Michigan State University, East Lansing.

"It's not uncommon for my patients to break down and cry. They're so relieved," he said.

Experts believe that stigma affects all patients to varying degrees. Research into the impact of stigma with respect to individual medical conditions has been going on for a long time. Studies have found, for instance, that a fear of stigma from a cancer diagnosis means people are less likely look out for signs of the disease. Alcoholism and drug addiction is a significant risk factor for suicide. Several studies have associated obesity with reduced earnings.

The National Institutes of Health is now trying to bring it all together to create a comprehensive body of knowledge about stigma.

In September, Fogarty International Center for Advanced Study in the Health Sciences, a part of the NIH, hosted a conference in an attempt to develop a research agenda. Next year, the center will call for grant applications in order to research the issue.

"We're starting to realize that stigma is a barrier to access to care, and a human rights violation," said Gerald T. Keusch, MD, director of the center. "And we need to take a more systematic view of stigma. What are the dynamics at the individual, household, community, social system level?"

Tackling the tough ones

Those at the NIH expect that the research will start with the most stigmatized conditions: addiction, mental illness, AIDS, other sexually transmitted diseases, and epilepsy. From there, researchers will look at other less stigmatized diseases, and search for the ways in which stigma functions and for means to minimize its effect.

At the moment, several things are clear. For the most stigmatized conditions, fewer doctors are interested in specializing in those areas and money is in short supply for treatment.

Of Dr. Miller's insured patients, half cannot get any reimbursement from their insurance companies. For the other half, every day is a fight.

"If their vital signs are elevated and I bring them in and give them medication to bring their vital signs down, then it's time for them to go, according to the insurance companies," said Dr. Miller. "When managed care companies decide where they can cut, addiction is very vulnerable."

For some conditions, patients hesitate before broaching the subject with their physicians, if they go in at all, and are less likely to comply with treatment regimens.

Jerry Cade, MD, director of the HIV program at the University Medical Center of Southern Nevada in Las Vegas, treats a couple of people a month who learn that they are infected with HIV after being hospitalized because they had an opportunistic infection, meaning that they've had HIV for years. And when he considers a treatment regimen, many say that they will only take it if they don't have to swallow pills at work. Others hesitate because they worry what will happen when other outward signs of the meds become evident.

"The side effects of the medication -- including facial wasting, and the fact that they don't want to be seen taking pills -- means that they can be diagnosed, but they're not always treated," said Dr. Cade.

And the cost can be high.

In the case of epilepsy, many children who are treated promptly and continuously for the five years after their first seizure can be medication-free for the rest of their lives, but untreated epilepsy can mean a lifetime of disability.

In the case of AIDS and tuberculosis, stigma is considered one of the major factors contributing to the raging worldwide epidemics, according to the United Nations.

"We're at a point in time where the right thing to do from a medical perspective is get in, get tested [for HIV], and get treated for a host of reasons from a public health perspective and for the health of the individual," said Dr. Cade. "And yet because there's stigma attached to it, they don't get tested."

There can be varying reasons for delays in diagnosis and treatment other than stigma, including income, insurance status and education. But experts believe that stigma plays a significant role both by itself and as a complicating factor to other barriers.

"Stigma is at the heart of this," said Dr. Miller.

And a solution to this problem is emerging as an important prize. Experts are hoping to learn something from the ever-lessening stigma associated with AIDS/HIV and epilepsy. But most expect reducing stigma will take a combination of education, increasing contact between people who do have stigmatized illnesses and those who don't, and legislation.

Dr. Miller, for example, is researching ways to mainstream addiction treatment as part of the medical school curriculum. At the University of Chicago, a consortium of mental health professionals is looking at ways to create opportunities for people who have personal contact with those who are mentally ill. Still others are calling for new laws that would mandate parity for mental health and addiction services.

"Look at disability legislation; they've made enormous strides in helping their cause through legal means," said Dr. Miller.