Note from the Editor: The Well Project is thrilled to be working together with AIDS United as a part of their "Access2Care" initiative to share the stories of several HIV-positive women, their journeys of getting into the life-saving care they need and their experiences of attending the International AIDS Conference in Washington, D.C. The "A Girl Like Me" blog posts on access to treatment will be cross posted on the AIDS United blog here.
Why aren't we being adherent and why of the 1.1 million Americans living with HIV, are only 25 percent virally suppressed?
I guess I have to start with myself. I found out I was HIV positive as a young 18 year old in 1991. I could say I was not on ARVs because the only thing that was available was AZT, but the reality is that I highly doubt in those times -- and with so little knowledge about HIV medications and all the side effects that I was hearing about -- that I would have started treatment.
As a Latino woman living in Miami, I have seen people who have many problems adhering to their treatment, getting tested, or because they do not have access to care because of lack of insurance or the STIGMA of having HIV. They would rather not even be seen in the clinic because of fear that someone will recognize them. This is very sad to me in many ways. What usually happens is the person gets very ill or they have their immune system broken down, like what happened to me when I dropped to 39 T cells after 10 years without any HIV medicine. As I see it, at least I had the option to start treatment back then and I was not put in the situation that some are in now: NO FUNDS! NO MEDICATIONS! WAITING LISTS!
I believe the most effective way to get people to adhere to their treatment or to get tested is through education, to be active in our communities and get the conversation going. We can't just sit back and take our meds while our brothers and sisters who are starting this journey lack the resources or information on how to live a long and healthy life with this virus. We have to go to schools, universities, jails -- anywhere where it's needed. At least that is what I do and will continue to do until my last breath. People have to realize that there is a serious crisis going on ... HIV/AIDS continues to spread and people are still dying. Every 9-1/2 minutes someone here in the U.S. gets infected and 1 out of 5 people have HIV and don't know it. Or simply people are NOT respecting this virus ... they think it's as simple as taking one pill and they will be fine.
It is horrific to me that only 25 percent are virally suppressed! Why? Well many people will have different answers!
Some will say as I do:
- No access to treatment
- Lack of information and sometimes no good communication with their HIV specialist
- Lack of transportation to their doctor's office
- The stigma and fear they have of being recognized for going into an ASO or an HIV clinic
- Not taking their medication how they are supposed to because of the reminder that they are positive or the side effects
- Lack of insurance (ADAP is getting better and we continue to fight for funding)
Health is a human right! When I was fighting for funding for ADAP in Florida, I was basically told by officials: "we are NOT obligated to give HIV medication to anyone! You are not entitled!" And as I told them, "Well, until it happens to you or someone you love, you will not understand." I also told them, "How is it possible that third-world countries give this life-saving medication for free and we are doing this to our own citizens? You will have blood in your hands!"
I know one thing: When I was given a month to live -- had 39 T cells and cervical cancer -- ADAP saved my life. I don't need it anymore because I have insurance, but I am grateful it existed!
I have written before that not everyone is an advocate or activist and not everyone is ready to come out of the "HIV closet." But we can do it on a smaller scale, maybe helping out a friend who is having trouble understanding the importance of taking their medication or having a good case manager or a good HIV specialist. I also believe in being a big brother/big sister to those who are new to this condition.
What I learned, or wanted to know more about at AIDS 2012 (IAC), is basically what I already knew from researching and being an international media activist, finding out new AIDS research updates (WE WAN'T A CURE). Seeing activists and advocates from all over the world was awesome for me! The change starts with the man in the mirror. Together we stand and divided we fall. We have to be united in this fight and fight fight fight for our human rights!
I am also for helping others around the world, but we have to take care of home and our own backyard first.
Social media is a beast and I am using it like crazy! Spread the word! Blogging, creating spaces for people all around the world in the Internet, Twitter, YouTube. I try to do it all in English and Spanish. The more I come in contact with the whole world or people here in the U.S., the more I realize that the lack of information and myths still continue strong.
That is why I am here and why all activists and advocates are here. To change things. To continue the fight like those before us.
And all of those things I learn, I immediately bring it back to my community and I spread the information through media all over the world.
Together we can make a change.
Love and light,
Maria T. Mejia