A Tale of two States and their struggle with HIV

On the surface, Indiana and Florida could not be more different. Be it size (Florida is the 3rd most populous state, while Indiana is the 38th); location (Midwest vs Deep South) or diversity of the population (Indiana is 84.3% white while Florida is over 46% minority), one might assume their challenges to be very different. However, each state's struggle with their own outbreaks of HIV only serves to reminds us of power of one of the virus' closest allies; poverty.  

Most HIV activists agree that poverty plays a major role in the intransigence of the epidemic. According to the International Labor Office of UNAIDS: "HIV/AIDS is both a manifestation of poverty conditions that exist…, and the result of the unmitigated impact of the epidemic on social and economic conditions. HIV/AIDS is at the same time a cause and an outcome of poverty, and poverty is both a cause and an outcome of HIV/AIDS." So there is no coincidence that as each state struggles with growing poverty, so too has HIV increased. 

Much has been written about Indiana's HIV outbreak-largely because it seemed to come out of nowhere. Starting in February 2015 through April 2016, 190 cases have been documented. Long known as a religiously and socially conservative state, it seemed ill suited to generate headlines for one town, Austin (population 4,200) now has a higher incidence of HIV than "any country in Sub Saharan Africa." says CDC Director Tom Frieden. "They've had more people infected through IV drug use than all of New York City last year." Indiana's poverty rate of almost 21% is also above both the national average (15.9%) and for that of Midwestern states (14.1%) 

Florida too, has both soaring rates of poverty and HIV. Roughly 1 in 6 Floridians live in poverty and, according to the Business Insider, has three of the top 15 cities where poverty is increasing the fastest. Florida also has the highest number of new HIV diagnoses in the nation, with a 23% increase in 2015 alone. 

Despite the largely different primary modes of infection in Austin, Indiana and Florida (IV drug use vs MSM), both states' increases in HIV can be linked to a lack of sustained effort to promote safer sex. In Florida, prevention funding has been flat or cut, and still has prohibitions on talking explicitly about sexuality in sex education classes. Austin IN, like much of rural America, has few medical providers. There is only one doctor and the Planned Parenthood clinic in the county that used to provide HIV testing and referrals closed in 2013, as government funding declined. There is a great fear among HIV surveillance experts of a growing prevalence of HIV in many other rural counties- especially in the south- but also in areas such as Idaho, which had two rural outbreaks in 2008. 

The ongoing debates about income equality and jobs carry a much greater importance that just determining the type of housing in which one lives or the schools our children attend: it has a direct impact on our health. Poverty is the ultimate social determinant and until we have the will to aggressively address it, we will continue to have these pervasive health disparities, like HIV disease. In the meantime, we know what works against HIV. Access to HIV testing and treatment; condoms; needle exchange programs and prevention education can make a real impact on preventing or halting the outbreaks. When the Indiana state health department aggressively moved in and offered HIV testing and treatment as well as setting up a needle exchange in Austin, it effectively stopped its outbreak. Sadly however, "the horse was already out of the barn' and reactive policies are just that, often too little too late. 

State governments and health departments, such as those in Indiana and Florida need to shelve their conservative rhetoric and provide a real plan to prevent HIV infection and to address their burgeoning IV drug use epidemics. Otherwise, we will continue to see a resurgence of this eminently manageable disease, all over the country. 

35 Years of HIV/AIDS

June 5, 2016 represented a solemn birthday as HIV/AIDS turned 35. On July 3, 1981, the New York Times published a groundbreaking article about a rare and often fatal cancer called Karposi’s Sarcoma, which was found in 41 cases of homosexual men in California and New York; eight of the sufferers died less than 24 months after the diagnosis was made. Due to the rarity of the cancer, it was believed at that time that earlier cases might not have been detected. An astounding 71 million infections later, and with over 34 million deaths, the HIV/AIDS epidemic is second in lethalness to the Bubonic Plague of the 14th century, which is estimated to have killed 75 to 200 million people. I began working in the field of HIV/AIDS in 1987, six years after its coming out party. During that time, an HIV diagnosis seemed akin to a death sentence. There was so much that we did know about HIV, and there was only one medication available to specifically treat HIV/AIDS. The medication, called AZT, was prescribed in such toxic doses that many felt more ill from the AZT treatments than they did from AIDS. People were so desperate for something to extend their lives that they would have taken almost anything. Needless to say, a fair number of individuals and "clinics" began to pop up with "cures" for AIDS. While a cure has continued to elude us to this day, we have dozens of medications that have extended the lives of millions of people throughout the world. The challenge now is to provide access to these life preserving medications for all who need them, and to ensure (or facilitate) people taking them. Several years ago I had an opportunity to meet with a group of female HIV activists from South Africa. When I informed them that not everyone in the US with HIV were taking anti-retrovirals, they were stunned. It was their understanding that HIV medication was widely available, and that everyone who needed them were taking them. I explained that health insurance plans in some states provided limited coverage for certain medications, and that some people (as many as 19%) living with HIV were unaware of their infection. While they understood this, they could not understand how so many who were aware of their diagnosis and had access to medications were not on medication. Various studies have shown that as few as 30% of people living with HIV in the US have suppressed viral loads, the gold standard for HIV care. While viral load suppression has risen in HIV+ individuals in care, there remains an alarming number of individuals not receiving consistent HIV disease management (ex. in and out of care, or not in care at all). While we cannot cure HIV, we have built a better toolbox that can help keep people alive for a long time, and there are even more tools in the pipeline. In spite of the tools at hand, however, issues of poverty, homelessness, substance abuse, and mental illness continue to disproportionately impact those most at risk for HIV. Thus, our goal at year 35 of the HIV/AIDS epidemic is to get people into care, and to help them stay there.

Know what you are talking about

I was recently asked if I felt that we, in the black community, could now decelerate our efforts to fight HIV due to so much progress with treatment. My answer, quite to the questioner’s surprise, was a resounding NO! Her question was predicated on the belief that the black community had previously issued a 'call to arms' and had mobilized, much like the LGBT community had in the 80's and 90's, to educate our community and advocate for more funding. It is downright depressing to think that the black community might be breathing a collective sigh of relief and backing off on whatever feeble efforts we are able to marshal, believing that we have won something. Has progress been made? Absolutely. Are we out of the woods yet? Absolutely not. Two recent reports have demonstrated that we still have a long way to go. While HIV has continued to wreak havoc on the black community (representing 44% of new HIV cases), the landscape is even bleaker for black gay and bisexual men in the United States. According to the Centers for Disease Control (CDC), one half of black MSM (men who have sex with men) “will be diagnosed with HIV in their lifetime” if current trends continue. To put this another way, if America’s black gay and bisexual men comprised a nation unto themselves, that nation would soon have the world’s highest rate of infection — twice as high as its closest rivals in Sub-Saharan Africa (CDC). If this isn't dire enough, the average survival time for African-Americans with AIDS is lower than for other racial or ethnic groups despite dozens of effective medications including a HIV prevention pill (PrEP). The main reason for this seems to be inconsistent treatment. From 2011 to 2013, only 38 percent of black HIV patients received consistent treatment, whereas about 50 percent of whites and Hispanics with the virus had continuous care (CDC's Feb. 4th Morbidity and Mortality Weekly Report). This disparity is consistent with the statistics regarding viral suppression, which is the gold standard for HIV care. In general, it is understood that the lower the amount of HIV virus in one’s blood, the lower the risk of opportunistic infections and the greater the life expectancy. Only about 25 percent of people living with HIV in the United States have achieved viral suppression, with African Americans being the least likely to do so at a rate of 21% compared to 26% among Hispanics and 30% of whites. Additionally, the 25-34 age group (one of the hardest hit among black MSM) is the least likely to have achieved viral suppression compared to other age groups, with only 15 percent of individuals 25-34 reaching this goal. The causes for this include the usual suspects of poverty, substance abuse, lack of access to health care, homophobia, stigma, etc. But, and back to my original premise, I have NEVER seen a true sense of urgency in the black community about HIV/AIDS. Oh sure, the Congressional Black Caucus has successfully fought for more money to address HIV in black and brown communities. Many black churches, civic and fraternal organizations have stepped up, and even a few celebrities have raised their voices (as well as money) for and about this epidemic. Our President has even released comprehensive HIV strategies, with specific objectives and time-frames. Nevertheless, we continue to get caught up in stereotyping and conspiracy theories that undermine the severity and urgency of this issue. I cringe when I read statistics about the terrible impact in black gay and bisexual men, because I know that gives our community more 'cover,' enabling us to bask in the warm waves of the delusion that HIV/AIDS is someone else's problem. We can no more stop HIV infection by building imaginary walls between ourselves and people who, well, are not 'like us' (gays and bisexuals), as we can stop terrorism and immigration by building brick and mortar walls. There is no simple solution to this. But, for starters, I suggest that we take the time to learn more about it. Something I hear over and over in my conversations about HIV/AIDS is that people don’t realize ‘how bad it is,’ despite the wealth of information available. I can't help but think about the words of two truly different, yet wise, black men. Chris Rock tells us (and I paraphrase) that books are like Kryptonite to black folks, and if you want to hide something from us, put it in a book. On a more serious note, President Obama, speaking to the 2016 graduating class at Rutgers University, said that “ignorance is not a virtue…It's not cool to not know what you are talking about. That's not keeping it real or telling it like it is. That's not challenging political correctness. That's just not knowing what you are talking about." Before we start dismissing HIV as only a “gay disease” or believing that there’s this secret cure for rich people, open a book or a suitable internet page (try the CDC.gov for starters) and begin to know what you are talking about.

"Kick and Kill"

The International AIDS Conference, this year in Melbourne, Australia, is one of the very few times that we can expect to read or hear about HIV in the regular media. For many years, the news was dominated by rising infections and mortality rates. However, the last few conferences have been dominated by new, promising results from studies that seem to confirm more and more that HIV is a manageable, chronic disease. Moreover, the "cure" word is also being tossed around quite often. For example, one recent study of six patients by Danish researchers seems to have taken a step towards addressing one of the more frustrating barriers towards curing HIV: the reservoirs of HIV that linger even after a person has an undetectable viral load. The researchers used the anti-cancer drug Romidepsin to activate the virus and bring it out of hiding. This potentially exposes the virus to the “killer” T-cells, which are responsible for attacking and eliminating pathogens in the blood stream but can’t detect the virus hidden in the CD4 cells. Unfortunately, in this study, even though the immune system detected the virus, it did not attack it. Nevertheless, the researchers are optimistic that in the next phase they can teach the immune system to recognize and clear these HIV cells. In closing, this study is indicative of the complexity of developing new therapies to combat or cure HIV. Yet, as we learn more about HIV, we get closer to that word, which decades ago seemed unrealistic, a cure.

Thank you Mr. Sterling

Strange title, eh? After all, why would I thank someone attributed to insensitive racial comments about African Americans in 2014? With an African American president, thousands of African Americans now listed among the elite, but elusive, top 1% (over a dozen of whom, by the way, who actually work for Mr Sterling) don't we now live in, as many idealistic pundits and scholars call it, a 'post racial' society? Well, this blog is not intended to thank him for reminding us that racism is alive and well. I am thanking Donald Sterling for getting HIV back in the news. Now, one would think that the greatest epidemic in modern history alone, would remain in the headlines by virtue of well, it being the greatest epidemic in modern history. Its amazing to think that 75 million total infections, over 36 million deaths and over 2.3 million new infections annually rarely makes the news. Nor is it the fundraising leadership of 'twinBill" of Bill Clinton and Bill Gates; or the dramatic breakthroughs in HIV treatment that have enabled millions to live longer, more productive lives; or even the tenacity of the advocates who have fought for access for these treatments. No, it takes the uniformed comments of an 80 year old man about one of the most iconic figures in the history of this epidemic, Magic Johnson, to justify front page news. So thank you, Mr Sterling for reminding us that HIV infection is not the same thing as AIDS and that people can LIVE with HIV. Thank you for reminding us that many people still blame the victim ( 32%- according a 2012 survey by the Kaiser Family Foundation). And last, but not least, thank you for reminding us that we still have a long way to go to reduce the crushing stigma still associated with HIV. The attention that you brought to this issue, misguided as it may have been, has produced the rare public 'teachable moment" that we HIV advocates and educators so often yearn for. Now, I guess we will just have to wait for the next major, public faux pas to get in the headlines again.

Ignorance is Bliss (Not!)

As someone working in the field of HIV/AIDS, I have had many conversations about the topic with people ranging from politicians to middle school students. However, I will never forget the recent conversation that I had with a long term (25+ years)survivor who shared how he could manage the symptoms, the side effects of the medication and even accepting that he may not live as long as he planned; but it was the stigma that he struggled with the most. So why, at the ripe old age of 32, does the stigma of HIV/AIDS remain so devastating? A new survey by the National AIDS Trust demonstrated how the lack of knowledge about HIV/AIDS, despite our access to social media and the internet, remains significant. For example: * 20% of the survey respondents believed that HIV/AIDS is a death sentence and that the life expectancy of a newly diagnosed person is about 10 years; * Over one-third of the respondents believed that people living with HIV were not allowed to work in schools, hospitals or restaurants; * Over 25% believed that people living with HIV are legally required to disclose their status. After reading these results, I recalled a conversation that I had with a Miami cab driver. I often share what I do for a living, partially to gauge the reaction, but also to ascertain what they know about HIV/AIDS. I was mortified when this cab driver, who looked to be in the 25-35 year old range and was deftly welding the GPS on his smartphone to navigate, said that he knew that there was a drug to treat AIDS: AZT! For those of us even remotely familiar with HIV, to hear someone express that s/he knew of only one medication to treat it-which happens to be the first anti-retroviral medication to treat HIV/AIDS AND was introduced in 1984! Is it fair to expect people to know more about HIV/AIDS? At what point does personal safety take over? Doesn't over 25 million deaths, with over 34 million people living with HIV/AIDS at least inspire some curiosity? I am a little biased of course, but it would certainly make my work and others like me, not to mention the lives of the tens of millions living with it a little easier if more people took the time to avail themselves of the tons of information available to them. Isn't it worth the time?

Were Michael Douglas' comments about HPV helpful?

Megastar actor/director Michael Douglas recently caused a stir when he implied that his stage 4 throat cancer was caused by the Human Papillomavirus (HPV), which he believe he contracted through oral sex. He went on to say that cunnilingus was also the "best cure for it." As I have written previously, one tract of HPV (HPV16) is known to be linked to oral cancer, manifesting itself in the back regions of the throat and mouth. HPV, the sexually transmitted virus best known as a cause of genital warts as well as being linked to cervical and anal malignancies, is thought to be responsible for an increasing proportion of oral(oropharyngeal) cancers, including throat cancer. However, lifestyle may present even greater risk factors and Mr. Douglas' tobacco habit, coupled with, at times, excessive alcohol consumption appear to be the most likely culprits. In 1992, he was hospitalized for an addiction which some at the time claimed to be sex. Douglas himself denied this and said he was in rehab for alcohol abuse. He has also spoken of recreational drug use. Many believe that the rise in HPV related cancers may be the result of a change in sexual behavior, especially an increase in oral sex. Oral sex may seem for many to be a safer alternative to penetrative sex, which are know to result in a host of sexually transmitted infections (STI'S) , including HIV. Most people seemed surprised to learn that STI'S such as Gonorrhea and Syphilis, not to mention HPV, may be transmitted through oral sex. A physician once said to me that the throat is an almost perfect breeding ground for infection. To his credit, Mr Douglas later backtracked and acknowledged that his cancer may not have been caused by HPV-he was just sharing how oral sex may lead to throat cancer. However, were his comments helpful in raising awareness in the public about HPV? Certainly his assertion that more oral sex can help cure it, was not. My fear is that many people do not take the time to read or even listen to the whole story and are more likely to get the gist of it from headlines and sound bites. Nonetheless, even if he had to pull his foot from his mouth (no pun intended), I am grateful to him for having the courage to bring to light an important issue. Now it is up to the rest of us to make sure that we provide the accurate information to the public.