Goodbye, PSI

I'm feeling bittersweet about my summer project coming to an end. On one hand, I'm excited about moving forward on my journey to become a doctor. But on the other hand, I'm really going to miss all of the patients and the staff of PSI.

As it turns out, the patients in my Health Literacy class actually learned a lot this summer. I'm so incredibly proud of each and every one of them. I gave quizzes at the end of almost every class to check if they had mastered the objective of the day. The patients ended up with an average of 90% on all of their quizzes! During the last class, I gave out surveys for them to take anonymously, and discovered that the patients also subjectively felt as though they had learned a lot. I asked them to rank if they disagreed or agreed with several statements on a scale of 1 to 5. They averaged a 4.75 on the statement "This group helped my ability to read and understand health information," and a 4.76 on the statement "The skills I've learned in this group will help keep me healthy."  I'm so happy about that.

The "Health Literacy" wristbands
I awarded the patients with.

We also had a "party" during our last group together. I handed out their Health Literacy wristbands that I had ordered for them, which they loved. The chef at PSI kindly made us brownies to eat, and we chatted and had a great time. During our conversation, one of the patients asked me a very insightful question: "I know you were here to teach us, but I'm sure you must have learned something this summer too. Can you tell us what you learned?"

I felt unprepared to answer this question. This is the type of question that normally takes hours of brainstorming, writing, editing, and re-writing before I would be able to come up with a perfect answer. However, being put on the spot in front of all the patients somehow provided me with a moment of clarity, maybe because I was just speaking honestly and from the heart. "I learned a lot about AIDS," I began. "But didn't you learn about all that in medical school?" one of the patients asked. "Yes, but reading about AIDS in a textbook is a completely different experience from actually getting to know a person who has AIDS. You can read all about a disease, but you can not really comprehend it until you understand the impact of the disease on actual human beings. Seeing the way in which you all have struggled with and overcome the hardships of AIDS is incredibly inspiring. Your eagerness to get healthy and your ability to persevere through all of the obstacles you have faced in your lives has made you the strongest group of people I have ever met. So, that's what I learned; I hope that answers your question."

The patients were all looking up at me, beaming. They have reinforced my desire to spend my life working to provide high quality health care to those who might not otherwise receive it. Regardless of my specialty, hopefully my experience this summer is just the beginning of a long career of serving the underserved.

Differing Opinions

One of the highest level critical thinking skills is to evaluate - that is, to judge the validity of something and back up your opinion. For one of our last groups together, I wanted to push the patients in my Health Literacy class to accomplish the difficult objective of evaluating a piece from the New York Times. I explained that reading health articles in newspapers and magazines is a great way to maintain the health literacy skills they learned in my group. I chose several recent articles relating to HIV/AIDS, and had the patients answer three questions about the articles:

     1. What is the main point of the article?
     2. Do you think the main point of the article is correct?
     3. Why or why not?

One of the articles I chose for the group to practice with is an Op-Ed by Desmond Tutu called "Obama's Overdue AIDS Bill". The piece calls for Obama to devote more funds to the fight against HIV/AIDS in Africa. Before I taught this class last week, I anticipated that the patients here would unanimously agree with the article, since I assumed they would always be in favor any efforts to eradicate AIDS from this world. My prediction could not have been more wrong.

I gave the patients a few minutes to read this article silently to themselves, then to write their answers to the three questions on their papers. I then asked one of the patients to present their opinion of the article and back it up. She told me that she did not agree with the article, because there are enough people suffering from HIV/AIDS in the United States. This patient's opinion was echoed by many others in the group. Obama needs to take care of the problem at home first, one said. With all of the diamond mines in Africa, they should spend that money to solve their own problems, said another. The United States is just one country, why should we have to provide for a whole other continent?, another patient asked. There was one person in the group who did agree with the article, and she bravely voiced her opinion that since the US has a lot of money, it should contribute to fight AIDS all over the world. However, she was outnumbered by all of the other patients who fiercely disagreed.

I was so stunned after this discussion. How could I have predicted they would all agree with the article, when in fact the opposite occurred? I expected that the patients here would identify with and feel a connection with the people living with AIDS in Africa, but for some reason, they don't. It seems like the patients view the epidemic in the US as distinct from the epidemic in Africa, not as a global pandemic. Maybe the patients feel as though they have been abandoned by the US government, and our country should not be taking care of people in Africa when they themselves have not been taken care of. Unfortunately, the reality is that AIDS is a global problem, which may never be solved unless different continents can work together cooperatively.

Medicaid Budget Cuts at PSI

Because of recent cuts to the Medicaid budget, PSI has recently been subjected to a number of changes. Medicaid pays for the patients to live at this facility, including their medical care, food, and housing (the total is over $400 per day). PSI is also legally classified as a nursing home, so it must follow the government's nursing home regulations and restrictions as well.

About five years ago, the government mandated that Medicaid would not pay for a nursing home patient's cost of living if they had to leave to go to the hospital within the first 30 days of their admission. This ruling is especially harsh at PSI, where patients are actually the sickest when they enter the facility. When patients first get to PSI, their T-cell count may be extremely low, making them susceptible to life-threatening opportunistic infections. This means that patients are often admitted here, get very sick soon after, and have to be discharged from PSI only to be re-admitted days later after their hospital stay. This procedure saves Medicaid money since they are not paying for two beds simultaneously (one at PSI and one at the hospital), but it is a huge hassle for the patients and staff here.

Last week, more budget cuts led to additional restrictions on when patients can leave PSI and still be covered by Medicaid. Patients who have been here for a while are given privileges such as leaving the facility to visit loved ones. Medicaid used to cover 18 of these visit days per year, but recent changes has limited it to 10 days. Any more time that patients spend visiting family and friends is paid out-of-pocket by PSI. Additionally, recent regulations have limited the total number of hospital days that Medicaid will pay for to 14 days per year. For patients as sick as ours, this is quite unrealistic, and PSI will likely end up paying the extra $400 per day for patients who need to spend more time in the hospital.

The staff of PSI is still unsure of how to handle these changes. Some solutions that staff members have discussed include discharging patients any time they go to the hospital in case their stay is unexpectedly long, or decreasing the total length of the treatment program here so that patients will not exceed their allotted time out of the facility. These solutions are far from perfect. Unfortunately, all of these restrictions imposed on PSI by the government are not in the patients' best interest - what should be Medicaid's top priority.

Rx: Optimism

In order to live at PSI, the patients must have a dual diagnosis of full-blown AIDS (not just HIV), as well as substance addiction. Other psychiatric diseases, such as major depression, are also very frequently co-morbid conditions with AIDS and addiction. As I mentioned in a previous post, the majority of the patients here have also spent time in prison. You would think that the patients here, having all of these odds stacked against them, would be jaded, hardened, and unhappy. But you'd be wrong.

An example of a journal response written by one
of the patients in my Health Literacy group.

Many of the patients here have incredibly positive attitudes, despite the myriad hardships they have experienced. For example, the patients love to write about their recovery in their journal responses (see the example on the right). They welcome me every day with an enthusiastic Good morning, Marianne! when I enter the building. They offer to help me carry my materials from class back to my office. They tell me about their goals to become HIV peer educators, mechanics, or bus drivers in the future. They even share their good news about their health with me.

One patient in particular is perhaps the most optimistic person I've ever met. This is remarkable, considering she was born with intellectual disabilities, she started hanging out with the wrong crowd as a teenager and got hooked on drugs, and then she was infected with HIV when she was raped during her twenties. She is enrolled in my Health Literacy class, but frequently becomes frustrated and pulls me aside during class, asking if she can come in later for extra help. Our tutoring sessions together tend to take a while since she is a fairly slow learner, but she always leaves with a smile on her face. Last week, she stopped by my office, and I assumed it was for extra help on the material we learned that day. Instead, she simply came in my office and handed me a piece of paper, grinning ear-to-ear. I looked at the paper, and on it was her latest T cell count, which was very high. It's because I've been focusing on my recovery, she told me. She may well be right - a quick Google search shows that there has been a multitude of studies linking optimism and better health outcomes. Maybe we should all take a cue from this patient and others like her at PSI, and adapt a more positive outlook on life.

The Face of the Epidemic

Another staff member at PSI noted that most of the patients are Latino or African American, which she said "reflected the face of the AIDS epidemic." I thought that this was an interesting comment, and it made me curious to see just how true this was. I checked out the statistics on the website for the Center for Disease Control and Prevention (http://www.cdc.gov/hiv, my source for all statistics in this blog post). Then I calculated the racial makeup of PSI. Interestingly, the demographics of PSI did not reflect the racial/ethnic breakdown of the prevalence of HIV in this country. As you can see from the charts below, there are disproportionately more Black and Hispanic/Latino people living at PSI than there are living with HIV in the United States. Additionally, there are very few white people at PSI, while they make up over one-third of people with HIV in this country.

Why doesn't the racial makeup of PSI match that of the HIV/AIDS epidemic?

Not only are people of color disproportionately affected by HIV (Blacks/African-Americans and Hispanics/Latinos make up 12% and 15% of the US population, respectively), but they are also disproportionately represented at PSI. Why should this be? Is it that there are relatively more people of color living in New York City? Is it that whites are less likely to enroll in treatment programs? I truly do not know the answer to this question, but I plan on informally surveying the people I work with, who I'm sure have greater insight than I do. I'll publish an update to this post afterwards. In the meantime, readers, what are your thoughts?

Update 7/21/10: After talking to my co-workers and doing a little internet research, I may have found a partial explanation.  Shockingly, 97% of people who are incarcerated in New York City are Black or Hispanic (http://www.nyclu.org/content/state-of-drug-policy-and-addiction-new-york-city-and-reform-of-rockefeller-drug-laws). Keep in mind that the majority of people admitted to PSI have come from prison and are mandated here by a judge. So, that is likely a major contributor to the racial breakdown of PSI.

HIV+ And Healthy Without Meds?

In addition to teaching the Health Literacy class this summer, the medical director of PSI asked me to help her complete a formal assessment of all 66 of the patients' health literacy levels to be included in their medical charts. I have been calling patients to my office one by one to give them the assessment, which consists of basic questions about health knowledge and HIV. For example, one of the questions I ask the patients is to recall all of the medications they are currently taking to treat their HIV. I then check what they have told me against their medical records to see if they answered correctly.

Yesterday, as I was completing an assessment with one of the patients, he told me he wasn't taking any medication to treat his HIV. At first I thought he was joking or mistaken, but he asserted that he has made the decision not to start antiretroviral therapy (against medical advice). Trying to hide my disbelief, I asked him why. He explained that he did not want the side effects from the medication, was not afraid of dying, and that he would pass away when God decided it was his time to go. He said he was diagnosed as HIV+ in 1996, and has been relatively healthy since (although, to live at PSI you must have full-blown AIDS). I asked him if he had any children, to which he responded that he had a 24 year old daughter. As a 24 year old woman myself, I told him I would want to see my own father live as long of a life as possible. He made the counterpoint that he didn't wish to extend his life if his daughter would have to watch him suffer and care for him for a longer period of time, and restated that God knew what was best for him and his family.

This patient has had the virus for at least 14 years; the average person will become very ill or die within 8-10 years of contracting HIV if untreated. Although the patient attributes his health to God's work, I think it is probably because he is what is called a "long-term nonprogressor." These people usually 1) have receptors on their T cells that do not easily bind to HIV so that it is more difficult for HIV to infect T cells, or 2) possess a specific immune protein that allows their immune system to more easily detect when HIV proteins are being made inside of cells. Both of these are due to beneficial mutations in the patient's DNA, and long-term nonprogressors can live with HIV for years and years without being affected by the virus.

As a medical student, it is hard for me to understand people who don't seem to care about improving their health when given the opportunity. And as an agnostic, it is hard for me to understand people who leave things up to "God" rather than take action to solve problems on their own. I found myself becoming incredibly frustrated with this patient's unwillingness to take medication, and this person is not even MY patient! I know that when I am a doctor, many of my patients will be non-adherent to their treatment and ignore my advice. I will have to learn how to effectively deal with this, so that my future patients are as healthy as possible and I can maintain my own sanity.