No Place to call home: Aging with HIV/AIDS

No Place to call home: Aging with HIV/AIDS

By: Aaron M. Laxton, Blogger, Activist and HIV-Infected Queer

 

 

I remember once in a class that I was in the professor had the class address issues regarding their own mortality. For  people in their youth this can be extremely hard since this can viewed as morbid. After all, we will live forever and nothing will ever hurt us...right? Obviously as we age we begin to understand that this is not the case; life is always moving and changing. Eventually life will move on and change without us.

　

HIV risk doesn’t stop at 50. In fact, men and women over age 50 account for 17 percent of all new HIV and AIDS diagnoses in the 40 states that have long-term confidential name-based reporting.

During the plague years hospices began to form that would address the needs of those dying from AIDS. It was in these hospices where patients were not viewed as an infectious disease but rather a person who needed love and compassion. A patient covered in Karposi Sarcoma or sufferingly was severe wasting was not feared but rather embraced, held and loved. Although the end of their life was marked by the extreme pain and suffering of AIDS related complications and social stigma, the hospice provided a safe-haven in their final days.

With the advent of improved medications and our understanding of our to treat HIV the amount of people dying from AIDS slowed; as a result the hospices that we once formed to provide support for them were not needed. It is estimated that approximately 50,000 annually die from AIDS in the United States. Some of these organizations restructured to provide other services and others simple were no longer there.

In 2009, people aged 50 and older accounted for 23% of AIDS diagnoses in the United States. Yet older adults are often overlooked in the ongoing HIV/AIDS conversation. Developed for the National Aging Network and others interested in educating older adults, the U.S. Administration on Aging HIV: Know the Risks. Get the Facts. Older Adults and HIV/AIDS Toolkit contains helpful resources and materials specifically designed to inform older adults about the risks of HIV/AIDS and to encourage older adults to know their status.

Now however we have an aging population of patients living with HIV/AIDS and we must consider how to provide the best possible care for them. Anyone who works with aging populations will tell you that finding residential care facilities is a daunting task. I work as a case manager and recently had to do this for a client. This particular client did not have HIV however the task was a challenge none-the-less.

As an HIV positive patient population reaches a time where they might need a residential care facility where will they go? You might say that they can go to any residential care facility that they want. In theory you are right however the facility has the right to refuse whomever they want. Typically once an administrator determines that a patient is HIV positive they are less apt to admit that patient into their facility. This is not something that cannot be hidden since all medical records must be given to the prospective facility.

Also there is the issue of stigma within the residential care facilities. For many of these facilities is it a challenge simply being LGBT. The fear and ignorance of HIV among others residents and staff alike would make it almost impossible for a person living with HIV to live with any quality of life.

One strategy might be to develop facilities that specialize for those living with HIV but does this further perpetuate stigma and ignorance. By creating specialized facilities are we simply shuffling those living with HIV/AIDS "Out of Sight, Out of Mind". That is a slippery slope. What would be next, homes for only white people? Homes for only black people?

If we agree that specialized facilities are not the best strategy then another might be to work with policy and regulators to ensure access to services and facilities by those HIV positive patients. Creating a demand for improve transparency regarding decisions for admissions into programs? Also working with residential care facilities to help educate staff and residents about HIV/AIDS.

We have an ethical obligation to provide great care for our elders not to simply shuffle them away somewhere until they die.

Aaron M. Laxton
My HIV Journey
aaronlaxton@gmail.com

Kansas seeks to imprison HIV-infected People

Today while on Facebook, a message popped up regarding a proposal that was being made in Topeka, Kansas that sought to quarantine those infected with HIV/AIDS. While this is completely absurd, we currently have criminal statutes in 34 states that are dong this very thing.

HIV Criminal Statutes State by State Breakdown

Patients who are living with HIV are treated as second-rate citizens who seemingly have no protectin under the law. That is a fact! While everyone can see the injustice of a message calling for quarantine, there seems to be little or no outrage over current criminal statutes which are putting patients in prison. Additionally a person that is prosecuted and sentenced in one state may get a life-sentence while in another state it substantially different.

Kansas Seeks to quarantine those infect with HIV.

There is no data to support that criminalization helps to reduce rates of infection. In fact these criminalization statutes only serve to further stigmatize those who are living with HIV/AIDS and to stop people from getting tested and starting treatment. Below are comments highlighted by Sean Strub who heads up the cause of modernizing HIV criminal statues with The SeroProject.

HIV Criminalization is Bad Public Health Policy
HIV criminalization statutes are terrible public health policy because they discourage persons at risk from getting tested. Those with HIV who are aware of their HIV positive status are more responsible in their sexual behaviors than those who are unaware they have HIV ; testing is a basic tool of HIV prevention as well as an essential gateway to care.

Criminalization statutes also make it more difficult for persons with HIV to disclose their HIV status. Those who know they have HIV already suffer significant discrimination and stigma. Disclosing one's HIV status can be emotionally difficult, risking rejection from family and friends, sometimes with great insult or abuse, and often jeopardizes one's employment, housing, relationships or personal safety. Criminalization of HIV legitimizes the ignorance, homophobia, racism and sexophobia that fuels inflated fears of HIV and those who have HIV.

Criminalization undermines efforts to prevent new HIV infections and provide access to care in multiple ways: Ignorance of one's HIV status is the best defense against a "failure to disclose" prosecution, which creates a powerful disincentive to getting tested and learning one's HIV status.

Young African American men who have sex with men are among those at highest risk of acquiring HIV, yet also among the most difficult to get tested. The prospect of prosecution for failing to disclose--especially since these prosecutions often boil down to a "he said, he said" or "he said, she said" situation--is a powerful and likely growing disincentive to taking an HIV test.

Most new infections are caused by sexual contact with persons who have not been tested and are unaware that they have HIV, yet only those who have taken responsibility and gotten tested are subject to prosecution.

Prosecuting the failure to disclose one's HIV status undercuts the most basic HIV and STD prevention message: that every person must take responsibility for his or her own sexual health.

Prosecuting the failure to disclose values the "right" to an illusion of safety, for those who are HIV negative or who do not know their HIV status, over the privacy rights of those who have HIV.

A legal obligation to disclose one's viral status prior to intimate contact creates a particular inequity for those who were born with HIV. If we are all born equal, why is it that this group must carry throughout their lives a legal obligation to disclose their viral status prior to engaging in intimate contact?

Examples of Prosecutions
The most publicized HIV criminalization cases are often driven by politically ambitious prosecutors and inflammatory or hysterical media coverage. These prosecutions feed into the public's ignorance and anxiety about HIV, reinforce negative stereotypes about people with HIV, and send conflicting messages about the real risks of HIV transmission in a given circumstance.

They depict people with HIV as dangerous potential infectors who must be controlled and regulated, making it more difficult to create a safe environment for people at risk to get tested and people with HIV to disclose their status.

The Iowa case provides a sobering illustration of the problem. The person with HIV who was charged with failing to disclose his status to a sexual partner was a 34-year old gay man who had been a volunteer with a local AIDS organization. He met a male partner online and went to his house. The person with HIV was on anti-retroviral therapy, had an undetectable viral load and used a condom when anally penetrating his partner. He posed little or no risk of transmitting the virus to his partner.

When the partner later heard that the man he had been intimate with had HIV, he went to the county prosecutor and pressed charges. The person with HIV was convicted under Iowa's extreme statute and sentenced to 25 years in prison. Fortunately, advocates were successful in getting the sentencing reviewed and after serving eleven months, he was released on five years' probation.

However, he still must register as a sex offender for the rest of his life, is subject to wearing an ankle monitoring bracelet and cannot leave his home county without permission from the court. He may not be around children (including his nieces and nephews) without adult supervision. He must, for the rest of his life, take lie detector tests every six months that ask intimate questions, including whether he wears women's clothing and if he is attracted to children or animals. He is prohibited from viewing any kind of pornography or even visiting social networking sites, like Facebook.

Iowa's statute is particularly broad--in theory, it could cause a person with HIV who kissed another person without disclosing their HIV positive status to be sentenced to as much as 25 years in prison--but other state's statutes and sentencing are equally as absurd.

Texas convicted Willie Campbell, an HIV positive man, for "assault with a deadly weapon" and sentenced him to 35 years in prison after he spat on a police officer who was arresting him for public intoxication.

Gregory Smith was within a year of his release from a New Jersey prison (after serving time for burglary) when he was charged with attempted murder, assault and terroristic threats following an incident in which he allegedly bit and spat on a guard at the county jail where he was held (Smith denied the charges). An additional 25 years was added to his sentence; he subsequently died of AIDS while incarcerated.

In late 2009, Michigan charged Daniel Allen, who has HIV and was involved in an altercation with a neighbor, under laws designed to combat terrorism, including "possession of a harmful biological agent". Prosecutors equated his HIV infection with "possession or use of a harmful device."

A man in Ohio is serving 40 years for failing to disclose to a girlfriend that he was HIV positive. He claims she knew he was positive and only went to a prosecutor after he stopped dating her and moved in with another woman.

An interesting note about the cases described above: none of them resulted in anyone actually acquiring HIV.

 

 

Do Not talk to The Missouri Health Dept.

KMOV coverage of Washington University in St. Louis' discovery regarding Bee venom used to attack an HIV Cell

Out of Context: "cure" of infant could lead to misuse of ARV's.

Out of Context: "cure" of infant could lead to misuse of ARV's. 

By: Aaron M. Laxton, HIV-Infected Queer, Activist & Blogger

Almost immediately upon news that a child had "cleared" the virus that causes AIDS, news stories captured everyone's attention. It is captivating due to the fact that people want so badly to have a cure and the media sensationalizes anything that can get ratings and viewership. I am not saying that the media is bad however there was one thing that stood out to me when I first read the story. A 2 1/2 year old girl that was treated within 30 hours of birth and subsequently was able to clear the virus within her immune system. How long will it be before patients get the idea that they will be able to increase their antivirals and somehow get "cured". While this may sound like a crazy thought, it can also be a deadly thought since the medications that we take are highly toxic when taken in large amounts. 

My fear is that it will only be a matter of time before we see patients that deviate from the prescribed dosages of their medications and subsequently cause catastrophic damage to their renal system as well as liver damage. I hope that my fear is unfounded and that people will not take the information provided out of context. 

The greater message that needs to be relayed to the community is that 1 in 5 people who are infected with HIV are unaware of it. HIV is well managed with early detection through testing and treatment. Additionally there is no reason why in 2013 a person is not getting tested and treated for HIV or that people progress to AIDS. In the United States there are still approximately 50,000 AIDS related deaths each year and approximately 50,000 new HIV infections. 

If you are a patient that has read the stories regarding the toddler from Mississippi and you are even considering changing your medications arbitrarily please don't. While the child was given large doses of ARV's it was done under medical supervision and this is not appropriate for all patients. The child was able to clear the HIV virus due to her immune system lacking memory T Cells that develop in a mature immune system. The report will undoubtedly impact how we treat pediatrics which will greatly reduce the 330,000 mother-to-child transmissions that occur around the world annually. 

Patients need to continue their medications as prescribed with complete compliance and adherence. I will continue to preach the gospel of "test and treat". To find a testing center near you text your zip code to "knowit" and the closest testing site will be texted to your phone. 

What does a child "cured" of HIV mean for you?

What does a child "cured" of HIV mean for you?
By: Aaron M. Laxton, HIV-Infected Queer, Activist & Blogger

Today, 3/3/13, news came that a 2 1/2 year-old child has been considered "cured" of the HIV virus. As soon as the story hit the wire it began to bounce around via social media and other media outlets around the world. So what exactly does this mean for the those of us living with HIV? While this is great news that supports researchers ideas regarding HIV reservoirs it does not mean that the treatment for an adult currently living with HIV will change. 

The announcement regarding the child's clearance of HIV is important since it goes to the direct issue of a child's immune system versus the adult immune system. Additionally the child was treated with abnormally large amounts of ARV drugs and treatment began immediately, within 30 hours of birth; that indicates that she was most likely infected in utero. Most patients will not meet these same conditions however this supports the philosophy that early detection supports improved outcomes. 

The doctor treating the child gave higher-than-usual "therapeutic" doses of three powerful HIV drugs rather than the "prophylactic" doses usually given. In the months following treatment the child showed no signs of the virus. Due to the mother's living situation the child fell out of care and treatment was stopped. Once Mississippi state health authorities tracked the mother/child down they discovered that she had stopped giving the girl antiviral drugs six or seven month earlier. 

Doctors expected to find that the daughters immune system was showing signs of HIV infection however to their surprise they could detect no sign of the virus. Almost immediately the treating physician took steps to rule out specimen contamination and other considerations that could account for a negative test from the daughter. Since August of 2012 labs in San Diego, Baltimore and Bethesdahave ran ultra-sensation tests on the baby's blood. While intermittently pieces of HIV DNA and RNA have been found there is no indication that the virus is actively replicating in the child's cells.

The importance of this discovery is that it goes directly to theories that researchers have regarding HIV reservoirs. Since the child was treated approximately 30 hours after birth this effectively stopped HIV reservoirs from developing. 

While this research is a move in the right direction towards a cure there is a need for guarded optimism as well as context. For those of us living with HIV this news does not mean that we can stop medications or that we will be cured tomorrow. It does however mean that our understanding of HIV is improving. 

Five things that men in the gay community do not want to talk about.

Five things that men in the gay community do not want to talk about.
By: Aaron M. Laxton, HIV-Infected Queer, Activist & Blogger

Recently while in Washington, DC to lobby for HIV/AIDS issues on the Capital Hill, I found myself talking with activists from across the country. These conversations are always interesting due to the fact that activists are by definition typically high-spirited and type "A" personality types. Events where activists are able to spend time together usually involve a time for using each other as a sounding-board, reflecting on both national and local issues. It is these conversations that allow us to gauge what impact we are having within our own communities and regions. Below is a list of five things that men in the gay community do not want to talk about however there is a need for an honest conversation.

1. Bareback Sex/Random Sex

Raw bareback sex is very much taboo and is seen as something that "others" do. Let's be honest though... Regardless of whether we want to talk about it or not, it is happening. I am a firm believer that a real conversation regarding prevention also needs to include risk-reduction practices that are inclusive of guys who exclusively practice bareback sex. Until we start to have an honest conversation about barebacking, we will never be able to successfully prevent exposure within the community.

Most, not all, gay men are sexual and the ways in which we go about finding tricks is as endless as our imaginations. Some guys use Craigslist while others use phone applications such as Grindr, Recon, Scruff or Growler. The one thing that I know is that while everyone has checked one of these formats out at one time or another, many people act as if they never have. Wake up and recognize the people are doing it and that an honest conversation is the only way that we will be able to reduce new HIV infections and exposures to other STD/STI's.

2. Crystal Meth

Tina, PNP, Party and Play... It goes by a lot of different names. Regardless of whether we acknowledge it or not, it is still a major issue within our community. There are many reasons for why gay men choose to use. Some men use crystal to avoid their emotions while others choose to use because of sexual disfunction. The incidence of guys that are using crystal is alarming. We must recognize that addicts come in many shapes, sizes, ages and economic variations. Addicts are your friends, family members, co-workers, fellow activists, clients and so on... Addicts are good at hiding who they really are however if you pay attention you will recognize the signs. An addict loses interest in things that once interested them. They will slowly stop caring about friendships and relationships and eventually they will isolate themselves as their addiction takes over.

What starts out as recreational use slowly morphs into a full-blown habit. In time you are doing things that you never thought you would do.

3. HIV/AIDS and aging

Let's face it, as an LGBT community we move those who are older out of the lime light. This might be done out of fear or maybe an inability to face our own mortality however that does not excuse or absolve us of this behavior. Most of our bars are filled with younger community members and if an older community dares to brave the cold-contemptuous glances of snotty-twinks the result will be a bitchy million-dollar attitude. It does not matter that it is directly as a result of activism from an aging LGBT community that a younger generations enjoys unparalleled freedoms and equality that a previous generation could only dream about.

4. HIV criminalization

34 states and 2 US territories have criminal statutes that specially criminalize HIV. Since the LGBT community is disproportionally affected by HIV it only seems logical that the community would push for modernization of these draconian HIV criminalization statutes. As gay men we must change how we view HIV criminalization and we must educate ourselves. The sad reality is that gay men are directly impacted by the application of laws that stigmatize those living with HIV/AIDS and are directly responsible for violence against those living with the disease, cause people to not get tested and subsequently treated to HIV or to stay in care after diagnosis.

5. Issues that are specific to minority groups.

As an LGBT community we must admit that the strategies used for white MSM ( Men who have sex with men) are not the same as those are used for say African Americans or Latinos. Until we start to have a real conversation about the cultural variations within our own community and how they play into exposure/transmission we will never be as successful as we could be in reducing new infections. One such example would be within the African-American community and men who have sex on the downlow.

As a community we can either continue to look at the world through rose colored glasses or we can address these issues head on. The conversations start one at a time until a dialogue is occurring throughout the community. Will you continue to perpetuate an attitude of ambivalence within our own community or will you resolve to have a real conversation concerning the issues impacting our community?