Showing posts with label Ryan White. Show all posts
Showing posts with label Ryan White. Show all posts

Wednesday, February 19, 2014

Insurer Says “Ryan White No Good”

The New Battle of New Orleans: Insurer Says “Ryan White No Good”

By Aaron M. Laxton

There is a new battle raging in the deep-south that without doubt could have implications for everyone living
with HIV/AIDS across the United States. Louisiana has found itself in a battle between those living with HIV/AIDS and insurance providers, namely Blue Cross/Blue Shield (BCBS) Louisiana.

The Affordable Care Act, which was enacted earlier this year, has served to leave patients living with HIV/AIDS in the cold. Transitioning from statewide AIDS Drug Assistance Programs (ADAP) and other assistance programs has been anything but seem-less. Blue Cross/Blue Shield Louisiana has arbitrarily decided to not accept third-party payments; this is generally how those living with HIV/AIDS obtain assistance through Ryan White Care Act. 

According to Robert Darrow who started the online petition, "The state's largest carriers is rejecting checks from a federal program designed to help these patients pay for AIDS drugs and insurance premiums, and has begun notifying customers that their enrollment in it Obamacare (The Affordable Care Act) will be discontinued."

 As outlined in a Press Release put out by Blue Cross Blue Shield Louisiana, the insurer states "Effective March 1, 2014, Blue Cross and Blue Shield of Louisiana will no longer accept third-party payments for our individual members' premiums. Only the policyholder or an immediate relative (by blood or marriage) or legal guardian of the policyholder (e.g. parent, spouse, sibling) can pay for that policyholder's healthcare premium." Three of the four health insurers in Louisiana offered through the state-ran Market Place will now essentially deny insurance to people living with HIV who need assistance to be insured.

Why should you be concerned about this if you are not living in Louisiana? The fear among advocates and AIDS advocacy organizations is that the trend that is being tested in Louisiana will set precedence which will become the new standard nationwide. Mark S. King, Kevin Maloney and Dorian Gray Alexander have all taken the fight directly to the insurer via an online media and a petition through Change.org. Additionally advocates in southern-border states are closely monitoring the situation. 

Should Blue Cross Blue Shield succeed the future of AIDS assistance programs for medical and prescription coverage could change for those who are the most vulnerable. If you have not done so already be take a moment to sign the online petition and let you voice be heard today.  

AIDS Discrimination in Louisiana Petition 

Sunday, March 24, 2013

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






Thursday, February 14, 2013

HIV will not kill you but your passivity and laziness will!


 
HIV will not kill you immediately but your passivity and laziness will!
By: Aaron Laxton, HIV-infected Queer activist and blogger

Last summer I had the amazing opportunity to speak at the ADAP Association Summit in Washington, DC. It was during my remarks that I posed the question, “If we simply provide medications to those living with HIV/AIDS yet we do nothing to improve their quality of life, what have we ultimately achieved?” The reality for those living with HIV is that quality of life is directly being threatened. It is being threatened and it must not be allowed to continue! Any meaningful existence for HIV/AIDS patients is directly being threatened in the form cost-containment measures with ADAP (AIDS Drug Assistance Program), reduction of HIV/AIDS program funding, increased HIV Criminalization efforts and outrageous pricing for new Anti-Retroviral Drugs in the name of research and development, just to name a few. In 2010 Gilead Sciences controlled at least 40 percent of the market share for HIV/AIDS therapies and showed profits of over $6.3 billion.

While some may call me an alarmist and radical, the fact remains that those of us living with HIV/AIDS are simply viewed as a “past-epidemic; a closed chapter- a black mark on our history marked by political-inaction, marginalization and demoralization”; take your medications and do not rock the boat is the current mentality! It is my opinion; big-pharma has bought the silence of a new generation of HIV patients thus quelling outrage over the lack of a CURE after thirty-two years. All of the advancements, therapies and medications we currently have came as a direct result of action from a generation that knew they would never be alive to see it. So please spare me the rhetoric that says, “We have never been closer to a cure as we are right now.” Where is the damn cure?

The Journal of the AIDS Society published new research that projected life-expectancies to approximately 69 years. One key challenge is that an aging population of patients living with HIV present researchers and clinicians with more questions than answers. Our understanding of AIDS-related malignancies has improving unfortunately patients that survived the earliest days of the AIDS epidemic are now staring a new insidious-challenge in directly in the face. Is it related to aging, anti-retroviral drugs, HIV/AIDS or all the above?

While aging populations of HIV/AIDS patients face significant challenges, the HIV/AIDS movement faces profound challenges which could prove fatal if not addressed. We must address philosophical questions regarding where we have been and where we are going if we are to ultimately achieve the Holy Grail, a CURE.

A previous HIV population had quite possibly the purest reason for fighting… a will to live. Today however, there is seemingly a lazy attitude among a younger HIV-community that directly translates into passivity and acceptance of the status-quo. Where is the fight?

Politicians will keep chiseling away at HIV/AIDS funding and programs until there is nothing! Twenty-five years ago, activists and AIDS Service Organizations would raise hell to stop this. Unfortunately many AIDS Service Organizations have lost their sense of direction and consequently no longer serve the populations that they were once determined to help. Those organizations which still have an interest in serving those living HIV are so afraid of advocating for specific issues lest their funding get cut.

We cannot depend on AIDS Service Organizations to place pressure on politicians on issues such as CURE Research, HIV/AIDS program funding cuts or issues such as HIV-criminalization. It is going to patients who are currently passive and lethargic to awaken from their dazed, lackadaisical-slumber and fight for their lives.  It you have ever heard me speak I always say the same thing… politicians do not change things out of the kindness of their hearts. They change because people place pressure on them and they do it out of self-preservation.