Life With AIDS and My HMO

John Riley is the administrator of a computer learning center for people with AIDS

Like millions of Californians, I belong to an HMO. The fact that I am HIV-positive and have been diagnosed with AIDS means that I use my health plan not just for preventive medicine or emergencies but to stay alive.

People with HIV/AIDS will tell you their full-time job is managing their health care. Upon diagnosis, right away I was faced with decisions that impacted my life greatly: choosing a physician, accessing a specialist who knows HIV/AIDS and obtaining the necessary drugs. I turned to local AIDS organizations for help. I also got involved with other HMO members with HIV/AIDS. I acted as co-chair for a support group for members in my HMO for more than a year. We discuss treatment options and health care solutions.

Many people are surprised that someone with AIDS would support managed care. But the truth is managed care has benefits that traditional fee-for-service medicine does not for people with chronic illness. Prescription drugs are usually covered by most HMOs for a low co-payment, usually no more than $10 or $15 per prescription. This is important, as the amount of medications that I take would easily be in excess of $1,250 per month if I had to pay the full price. This cost savings becomes more important to the many people with HIV/AIDS who take even more medications than I do.

Some traditional fee-for-service plans have lifetime benefit limits that HMOs do not have. It is commonplace that someone with HIV/AIDS could reach the dollar amount limit that exists in fee-for-service, after which the patient would have to obtain an alternate insurance plan or go on Medicare.

My experience has taught me that educating yourself about your disease and your options are two of the most important factors in getting the appropriate health care. I recently worked with my doctor's office, pharmacist and my HMO case manager to access a drug that I needed that was not on my plan's formulary. It takes advocacy on the HMO member's part to get these things accomplished. If we are unable to advocate for ourselves and there is no one else to assist us with follow-up, then service problems may occur.

An exciting development in all this is how HMOs are working with medical groups to identify treatment options for HIV/AIDS members that work best. Progressive HMOs are applying so-called "Standards of Care" to their network of doctors. In this way, best treatments can be applied uniformly to everyone, regardless of where they live and access health care.

HMOs can be advocates for those with HIV/AIDS. If you don't get the medical care or drugs you need, immediately let your doctor, medical group and HMO know of your concerns. In addition to verbally telling your doctor, call your HMO and ask to speak to a case manager if one has been assigned. If not, ask your member services representative to refer you to one. Many times, members only let their doctor know of their concerns without notifying their medical group and HMO.

Managed care can offer a coordinated system of health care that can help people with HIV/AIDS get the best care possible, ensuring that doctors, nurses and hospitals work in concert for the patient. That is the ideal concept.

But it is important for people accessing medical care to become as knowledgeable about their condition as they can and learn how to work with their doctor, medical group and HMO as effectively as possible. Most important is to ensure that they'll get the optimal care by having at least one person they trust to advocate on their behalf if you are unable to do so, and to assist them even if they can.

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