Out of Network, Out of Options: How New York is Separating HIV Patients from their Doctors

When actor Charlie Sheen appeared on the Today Show to reveal his positive HIV diagnosis, he shared the stage with his physician of four years: Dr. Robert Huizenga. While watching, I was struck by the relationship between patient and doctor, because it is one I have seen countless times throughout my own medical career. Huizenga appeared not only as a physician, but also as a source of emotional support for his patient. His presence was a visible comfort to Sheen, and it was obvious that the two had forged a strong and lasting bond over the course of treatment. Most of all, he ensured that Sheen didn't have to face this moment alone.

For the HIV positive patient, a good doctor is far more than just a healthcare provider. He or she is a constant ally in what will be a lifelong fight held on numerous fronts: emotional, legal, bureaucratic, and of course, medical. The special bond that HIV patients (and others who suffer from chronic illnesses) share with their doctors is more than just unique and therapeutic. It is an essential part of the treatment process.

But this bond is being broken for many in New York, as discriminatory out-of-network restrictions on individual healthcare continue to separate HIV positive patients from the doctors they depend on. While our governor says that New York stands at the forefront of HIV treatment, we are in fact one of only three states in the union where these restrictions exist (the others are New Hampshire and Massachusetts).

As an immunologist and HIV specialist who has been treating patients since the dark days of the 1980s AIDS epidemic, I have continually witnessed the power of the doctor-patient relationship in effective care of this disease. I had seen some of these relationships grow for upwards of 30 years--until 2013, when the Affordable Care Act changed everything. While the ACA has had many positive consequences, there has been a glaring error in its execution here in New York. In order to attract a greater number of individual insurers, the state health department wholly eliminated requirements for out-of-network coverage on individual health plans. In the short-term, this has made our healthcare exchange among the nation's most successful. But it has also risked the health of many vulnerable citizens. Put simply, these restrictions mean that patients who purchase their own healthcare plans on the individual marketplace cannot see any specialists who are not on the in-network provider list. This legislative decision is shattering decades of work for New York's HIV patients--tearing them apart from their long-time doctors and leaving them to fend for themselves in networks with critical shortages of HIV specialists.

You may ask: why don't more HIV specialists go in-network? I tried, and it simply does not work. On top of having treatment plans second-guessed by insurers at every turn, paltry in-network reimbursements required me to see three to four patients in a single hour in order to keep the lights on. No matter how you look at it, 15 minutes is just not enough time to treat this disease. This kind of timeframe not only eliminates the benefits of the doctor-patient relationship, it creates an environment in which things are missed--with potentially fatal consequences. HIV is variable and needs someone with a profound depth of knowledge and experience to recognize a trend, a shift in someone's condition, or something else unexpected coming down the road. This is why I had to leave the networks, and it is why I now see around 10% of my long-term patients pro bono. If I don't, I leave them at the mercy of an insurance marketplace that is quite literally risking their lives.

Make no mistake: this is discrimination, pure and simple. Individual purchasers with HIV are receiving a different quality of care than those who receive coverage through employment. If they are even able to find an in-network HIV specialist, they could end up waiting months for one 15-minute appointment. This is a huge step backwards for all of us--and New York is one of only three states where it is happening.

During his recent World AIDS Day Speech, Governor Cuomo told us that: "Thirty years ago, New York was the epicenter of the AIDS crisis--today I am proud to announce that we are in a position to be the first state in the nation committed to ending this epidemic." The Governor is right: here in New York, AIDS is our fight. We have a moral duty to act as an example to the rest of the country--and the rest of the world--on how to treat this disease. That makes it all the more shameful that we persist in holding on to these regressive policies.

While it easy to blame the insurance companies, the fact is that insurers will invariably follow the safest path that the law allows. It is state officials who let this continue. If we are to re-establish New York as a beacon of hope for people living with HIV and other chronic diseases, we must let Albany know that healthcare discrimination is unacceptable in 2016. If you feel the same way, please contact your state representative and tell them you'd like to see an end to unfair out-of-network restrictions.