Monday, April 25, 2011

Tell Washington, DC to FULLY fund ADAP and other HIV/AIDS Programs to prevent needless deaths

I created this petition on change.org about 3 weeks ago, and it is approaching 600 signatures, though many more are needed. For those who have already sign; I thank you! Below is a link to the petition. Please sign, share on facebook, and tweet it. E mail it to friends and family, to any advocacy e mail list serves you have. I will be attending the ADAP summit in July and hope to present this petiton to members of congress. Below is a brief description of the petition and the link to it.

To: President Obama, Congress, and the US House of Representatives

On this the 30th year of the AIDS epidemic our country is at a perlious time in the fight against HIV/AIDS. ADAP and other HIV programs across the country are being reduced, threatened to be eliminated, and people are being put on waiting list to receive life saving/sustaining medications. Never before has this situation been as dire as it is now and a call to action is required!

Ryan White paved the way for so many of us living with HIV/AIDS and today his legacy is being threatened. It is time that we re-ignite the movement in the fight for equal rights AND equal access to care for EVERYONE living with HIV/AIDS across the United States. WE MUST tell Washington and States throughout the Country to protect the legacy of Ryan White.

Quoting the words of Jeanne White Ginder “the biggest contribution I think that Ryan made is, and I didn't know it at that time, that his legacy would be that people are getting their drugs and their treatment and that people are living with AIDS.” I wonder what his mother’s remarks would be today of this crisis.

Read more and sign the petiton! Thank you for all your much needed support!

http://www.change.org/petitions/tell-congress-and-states-to-stop-cuts-to-adap-and-other-hivaids-programs-to-prevent-needless-deaths

Kevin Maloney
RiseUpToHIV
email: kevin@riseuptohiv.org

Wednesday, April 20, 2011

Community Outreach, Syringe Exchange, Overdose Prevention

In the past two weeks I have been through my ASO (AIDS service organization) diversity training, 20 hours of enhanced community outreach using the TTM (Transtheoretical Model of Change) as well as the The Relational Outreach and Engagement Model (Roem). I also opted to receive training on New York's Syringe exchange program, particularly my ASO program called Poject Safepoint. The main goal of outreach is to get people to know their status. Other things we do include handing out information regarding  HIV and Hepatitis C, as well as harm reduction materials. We talk with individuals and encourage them to know their status and talk to them about reducing their risk of contracting HIV/HCV through harm reduction techniques.

Harm Reduction includes handing out clean syrninges to IV drug users. They can come to a van the ASO has. It's parked in various areas of the most devastated areas of the epidemic and in  high risk areas of IV drug use. Syringe exchange programs are often met with skeptisim and critsism by local communities, and law enforcement and other politicians. However, it is lack of education that feeds into this skeptisim and critisism. A drug user will not quit until they are ready to, so we must educate users on harm reduction techniqus. 1/4 of all new HIV infection are from IDU (intravenous drug users).  When NYC implemented it's syringe exchange program 14 percent of new infection were from IDU, that number has not decrease by 2/3 as a result of this program.

We provide individuals with a months supply of clean syringes, and a sharps container to return they're needles. If people are going to shoot drugs, we want them to do so with a clean needle. "Sharing the works" with a dirty needle could infect everyone, so we encourage users to use their own clean needles. We educate them and provide them with bleach and water so that they can clean their needles, which reduces risk, if no bleach is available they can use water only which can still reduce risk. We also provide them with bottle caps. Bottle caps are used to mix drugs in and people shoot up the drugs with these caps. If people are sharing the same cap, they could be injecting infected blood. So, we provide these clean caps to reduce the risk.

Another Harm Reduction technique is Overdose Prevention. Particularly, for opiate users. For those experiencing an overdose, without the administration of Naloxone, or brand name Narcon; an overdose resulting in death is very likely. This drug immediately reverses an opiate overdose, and put's a user of opiates in immediate withdrawl. While it may save many lives, many people say they would rather die then take Narcon, because of the extreme and immediate withdrawl symptoms.

HIV and Hepatitis C testing is done on the van, and referrals. Referrals may include substance abuse refferals, or refering recently released inmates into the ASO re-entry program. Or, maybe they have no or inadequate insurance. We can refer them to someone in the ASO who can go over their options. The ASO can bridge an individual to care and services, such as medical care, housing and food stamps.  We also promote a Women's only HIV + support group. And the ASO does in-house testing. We provide referrals to other testing locations as well.

So far, I have done one outreach event at a soup kitchen; and I was humbled sitting down for my first meal ever at a soup kitchen amongst 70 + others who rely on this meal each tuesday and thursday. The food was good, and I got to speak to people at my table, but most importantly show my face amongst the community I will be working in. This soup kitchen is put on by a church, it's reastaurant style. Volunteers cook and serve the food, drinks and do all the clean up.  Today, was to be street outreach, but because of the bad weather it was cancelled.

I am looking forward to volunteering my time and getting deeper involved, and I will keep you posted about my work along the way, never though revealing information about any specific person! I hope you learned a bit from this entry. To learn even more about Harm Reduction I invite you to visit the website of the Harm Reduction Coalition

Knowlege is power! Stay safe!

Kevin Maloney
"Rising Up, Standing Out, and Speaking up about HIV/AIDS and Hepatitis C" -KM
e mail: kevin@riseuptohiv.org
facebook/twitter @RiseUpToHIV

Thursday, April 14, 2011

Maria's HIV Story; It Friday and I still have HIV; Video Blog; and written story.

I've been very fortunate to meet Maria online and communicate with her, and am looking forward to meeting her in person. While our stories are very different, we share the same passion with countless others who are rising up, standing out, and speaking up about HIV/AIDS.  That passion is telling our stories, educating people about HIV/AIDS, breaking down the stigma, and most importantly encouraging people to know their status.

I only hope my 7 and 4 year old nieces are armed with the knowledge and make the right choices. And one day I hope they will have an opportunity to meet such a strong and powerful Woman as yourself! 

Her story is very empowering, encouraging, educational, and inspirational. Thank you Maria for doing your part to make people more educated, and safer when it comes to HIV/AIDS. Your story moved me to tears, but it is a story that young people and old a like NEED to hear.

Thank you for allowing me to share your story on my blog. AND I will stand in line hand in hand with you and the 34 million others when we have a cure.



Current global statistics state that an estimated 34 million people globally are living with human immunodeficiency virus, the virus that causes AIDS. In the thirty years since the discovery of the virus, much has changed, yet so many continue to struggle to live with the disease, a disease that science still does not completely know how to fight.

Maria Mejia gets up and makes her breakfast. She thinks about a birthday party she will attend over the weekend. She thinks about what she will wear, she thinks about the gift she will bring. She looks into her living room, and laughs at her two Chihuahua’s, excited about something outside the window, and it makes her smile. Then she gets out her med box and remembers that she still has HIV. For those two minutes, Maria let her mind wander to a place where HIV was not present, but after twenty years since her diagnosis, she knows her HIV will never go away, she knows it will always be with her - unless they find a cure.
Maria’s story is not unlike so many other HIV afflicted patients. She contracted the virus from her heterosexual partner through unprotected sex many years ago.  She was seventeen years old.  She is thirty eight years old now, and lives with her partner of five years, Lisa in Miami, Florida.  Maria has been living with HIV for a long time. Like so many women, Maria’s male partner had never been tested and was unaware he was infected. He passed the virus on to her through unprotected sex.

Maria did not realize she had contracted the virus until a random blood test for a job produced her diagnosis. Maria is similar to others with HIV, but she is also a fighter. She is dedicating her life to fighting the stigma, educating the young, and spreading the word to get tested. She was just a young kid looking for a job before her HIV diagnosis, her life’s direction was to have fun, like most seventeen year old kids, and except twenty years ago they did not have posters, and pamphlets, and the internet. Maria now is an activist, LGBT supporter, mentor, and educator for others with HIV, especially in the Hispanic community.
Maria is the daughter of Columbian immigrants, who came to the United States for a better life. Like many immigrants, they found that the American dream wasn’t always the dream they expected. Maria’s uncle started sexually molesting her at age three, unknown to her parents. This was a confusing period growing up as a victim of abuse. Things like this were not spoken about in her strict Hispanic household.

Maria endured this abuse for years and then eventually came under the mental and verbal abuse of her autocratic, mentally unstable father. He ruled his home with a tyrannical fist.  He not only verbally abused Maria, but her mother as well. Maria’s mother eventually left her father, but not until Maria had been placed in a series of foster homes, and taken away from her family, by social services.  At thirteen, she ran away from the foster system in Florida, and spent some considerable time living on the streets.

Soon after, alone, young, with no one to turn to, Maria started keeping company with a family that took care of he; a refuge from the outside world, a family not unlike herself, a gang family. For Maria, this group was a social structure of other teens, from similar backgrounds. She became the girlfriend of the gang leader, Flyskee, another “kid” just trying to get by in the world; being the girlfriend of the gang leader made Maria feel special.  It had been a long time since she had felt special.  Like most teens their age, they had their whole lives in front of them, plenty of time, and nothing to learn. They lived a nomadic life, working odd jobs for money, and eventually making their way to Kentucky where they heard about work with an organization called Job Corp.

During the interview process, Maria was asked to take a ransom drug and blood test. She really did not think anything about it when they asked her. Although she had heard of HIV and AIDS, she knew very little about the disease. She was not prepared for the news she was about to receive. She remembers being called back to the testing clinic for a meeting. She walked into the small room, sat across from the clinic's counselor unaware that she her entire life was about to change. Maria's counselor delivered the devastating news that Maria had AIDS and that she should go home and prepare to die. There was nothing they could do for her. Maria felt sick to her stomach, she felt fear, she shook, and for a while, probably months, she just walked around in a complete fog. Maria said she felt like her mind was outside her body, just trying to absorb the news. She had so many questions. How could she be HIV positive? She wasn’t a commercial sex worker. She didn't use needles. She wasn't in the right demographic. She applied for a job, they told her she had AIDS and was dying. It felt unreal. Maria went home and looked at her beautiful face in the mirror. She did not look sick. She did not feel sick. She cried, and cried, and cried some more. This disease, this AIDS, it was what gay men had, not her.

Maria had contracted HIV from Flyskee. Flyskee, was young, uneducated and an IV drug
user. He didn't know about his HIV status, in fact he probably did not know much about AIDS at all. Back then, they didn’t know about the safety of condoms, they did not know about safe sex. Maria didn't know Flyskee was an IV drug user, and this too was before the needle sharing prevention programs were available. Some years later Maria heard Flyskee had died of AIDS. She really did not know how to feel about his death. She was sad, and she was angry, angry that Flyskee had done this to her. She was living in a black hole.
That was in 1991, one year after congress enacted the Ryan White CARE Act, which allowed care for persons suffering from HIV and AIDS to receive treatment, drug treatment, which at that time, consisted of roughly three antiretroviral drugs. Maria, like many people who were told they had AIDS, fell into a deep depression, and thought about suicide. After all, what did she have to live for? She feared telling her family, she went through periods of denial, and did not know where to turn. It was at this time, that she reunited with her mother in Miami, and finally told her, she had AIDS. Not knowing much about the disease herself, Maria’s mother turned to prayer, and they agreed to keep it to themselves and tell no one else in the family. The stigma attached with AIDS was so strong, Maria and her mother both feared being ostracized from their family and community. It was too strong for either of them to deal with at that time. Much of the information on HIV/AIDS was published in English; so many non-English speaking patients did not understand the need to get on medication as soon as they were diagnosed. Many in the Hispanic community in 1991 thought AIDS was the “gay person’s disease”. Some people thought you had to be rich, or have good medical insurance to afford treatment. Maria and her mother did not know where to turn. They were confused, and felt like no one would help them if they disclosed Marias condition.

Maria tried to keep busy never knowing how much time she had left in her life. She volunteered and learned more about the disease that affected her and so many others. She trained with the International Red Cross, took classes with Orasure to become a pre and post counselor for HIV/AIDS services. She knew from her classes that there were many people who needed to get the correct AIDS/HIV information, and treatment. She knew also that they responded to her, and listened to her, and that she could help. She felt, even in those dark days in the beginning that she had a new life mission. Feeling like she suddenly had a purpose, Maria felt revitalized about what her life should become. Maybe having AIDS was a message, for her to speak for those who were afraid to speak, to teach those who needed to learn. Maria finally had a life mission.

Unfortunately, being in her HIV denial, and after going without medication for many years after her diagnosis, Maria’s illness started to get worse. She tried eating health food, and living the best life she could live, but with AIDS, you can never really feel safe, with AIDS it never really goes away. She started suffering from some of the symptoms that all HIV/AIDS patients experience, nausea, fever, fatigue. Knowing she would be dead in a few years if she did not seek medical treatment Maria knew that avoidance and denial were not going to help her. Her symptoms were like other patients with AIDS. Nausea, diarrhea, and vomiting, all of which can last for months, all of which will wear down any patient, taking every ounce of strength a body has. Thrush in the mouth and painful mouth sores are also common, which cause loss of appetite in patients who need to eat the right foods in order to retain their strength. Many, people, including Maria, suffered from a painful condition that includes tingling and needle-like stabbing in their feet called neuropathy. So bad can the pain be with neuropathy, some people can barely walk. Maria discovered that even a simple cold could cause her to be ill for weeks, and she had difficulty recovering. Untreated, AIDS will eventually lead to death. Medication is the only answer.

Marias mother returned to Columbia leaving Maria in the United States to get treatment. Alone, sick and scared, Maria faced an uncertain future. Her infectious disease doctor retested her and told her that her CD4 T-cell count was 39, dangerously low. CD4 cells are one particular type of immune cell that helps the body fight off infection, and tests to monitor CD4 cells are considered a major factor in determining how a patient will respond to antiretroviral therapy. Often times the central nervous system is affected, resulting in memory loss, headaches, unusual nightmares. Some patients develop Kaposi’s sarcoma, painful sores all over their bodies. Maria’s immune system was so compromised; she was dangerously close to death. Maria knows, “If the disease isn’t bad enough, the side effects of some of the medication are even worse. “Some drugs are toxic, they kill the virus, but are very hard on the body”, still she continued to take her medication, despite the side effects. She wanted to feel better, and she was willing to give the medication a chance. Every day is a struggle for Maria, and for the thousands of people like her, but she herself will never give up hope for a cure.

Maria was in what she calls “the HIV closet” for many years, and many never knew about her positive status, it was not something she openly discussed. This is where HIV infected people stay, away from judgmental eyes, away from the prejudice of a disease that many everyday people do not understand. The stigma associated with AIDS is still very strong, and spreads fear to the general public. Posters of naked people, sleeping with human size scorpions hang from the walls of clinics as a deterrent to those who choose not to practice safe sex. Posters like these are everywhere. Inside, Maria was safe. Inside, no one could judge her. When she went out, only a handful of people knew her secret. It’s a dark lonely place, where depression, anxiety and isolation only add to the misery. “You can never be too sure how people will react if you tell them you’re HIV positive. They think if they talk to you, they are going to catch it. They are afraid of you. That’s how much they really do not know about AIDS”.

One day in 2009, Maria remembers reading an article on HIV and the Hispanic/Latino population in the United States. It said, ‘ According to the United States Department of Health & Human Services, the Center for Disease Control, Hispanic/Latino women represented a quarter (24%) of new infections among Hispanic/Latinos in 2006. Their rate of infection was nearly four times that of white women (14.4/100,000 vs. 3.8/100,000)’. Maria thought to herself, “This is not getting any better, those girls, those kids, they are just like I was. They need to listen to someone like me. They NEED to have someone tell them how to protect themselves. They need someone who looks like them, and who speaks like them. She knew that she could reach them”. There simply were not enough young, pretty Hispanic women who were willing to expose themselves to get the message out. So finally, after a good cry, and a nervous stomach, Maria got angry enough to “come out”… out of her HIV closet.

She started posting her story on some support websites for HIV and AIDS patients. Then she started a blog on Facebook so others could contact her. Maria is not a doctor, but she knows the right things to say. She has been professionally trained. She always encourages people to talk to their health care professionals. She tells them that everyone is different and that not every patient needs to be on the same medication. Most importantly, she tells them to do their homework. She encourages them to read and educate themselves on every reputable site they can find, talk to counselors and medical personnel, pharmacists, scientists. Maria’s biggest message to anyone is “get tested”. The sooner you get tested, the sooner you can start medication that may prolong and save your life. Maria admits, “Some people do not want to know, but they need to…for themselves, for the people around them. AIDS is still a disease that will kill you, but is manageable with the correct medication.  AIDS is not a death sentence; it is a LIFE sentence People need to understand that”.
Maria’s days are brighter now, she and her partner of five years, Lisa Laing, enjoy a relatively happy life. Maria still has her bad days, but she has some good ones too.

She and Lisa are active in their community, working with both AIDS patients and patients of need in various areas. They enjoy the beach and their dog, and art galleries. It is a long way from that lonely, sick kid who had nowhere to go. Far away from that kid who lived on the streets with the gang. Maria is 100% compliant with her medication, as all HIV patients need to be. She is an advocate for healthy eating and organic foods. She recommends a good massage, particularly for those folks who suffer bone pain or neuropathy as a result of HIV. She promotes regular HIV testing, as her HIV negative partner Lisa is tested regularly. She has completed many college certificate programs for counseling and education for HIV/AIDS programs, and continues with her outreach work.

She is now speaking in churches, schools, and is being solicited by groups who want her to come and share her story. She is interviewed by radio stations in both English and Spanish, and she has modeled for pharmaceutical companies in their HIV campaigns.  Maria is fast becoming the face of people living…..LIVING… with HIV. Maria knows she has a story, and she also knows that there are others who have similar HIV stories. Her story might be a little different in some places, and in some places, it might be the same, but Marias message to young Hispanic teens is always the same, “I have to get to these kids, they have their whole futures in front of them. I don’t want them to live it like me. Get tested, practice safe sex, use a condom, take your medication, and eat healthy.” That is her message.
At the end of the day, Maria like so many people dealing with AIDS/HIV has to look at the face in the mirror. The face is the same, it ages a little, but the story is still the same and Maria thinks to herself, “its Friday…..I Still Have HIV.”


Author: Shelley Kametler
Edited : Carolyn Farkus

If you would like to contact Maria directly you may e mail her at mariahiv1111@yahoo.com or mariapositive1111@yahoo.com

You can follow her on the following sites as well:

http://thesop.org/story/20110329/judyth-piazza-chats-with-maria-mejia-advocate-for-hiv.html

http://www.stoppingthehate.com/

http://sdgln.com/news/2011/03/22/maria-mejia-brings-powerful-voice-women-living-hiv

http://afanlv.wordpress.com/2011/03/21/the-real-deal-with-hiv-when-do-you-tell-with-aids-activist-maria-t-mejia/

http://issuu.com/recorriendoamericanews/docs/recorriendo29/17

http://girllikeme.org/author/mariateresa1111

http://www.thebody.com/content/art60432.html

http://www.vihvir.com.ar/tiempo-de-contar-mi-historia

Wednesday, April 13, 2011

Is Hepatitis C treatment covered by your states ADAP program; and some facts on Acute Hep C

The AIDS Drug Assistance Program (ADAP) provides HIV/AIDS related prescription drugs to uninsured and underinsured individuals living with HIV/AIDS and in a handful of states provides Hepatitis C treatment which consists of interferon-based treatment and Ribavirin.
ADAP funds are used to provide medications to treat HIV disease, or to prevent the serious deterioration of health, including measures for the prevention and treatment of opportunistic infections. As a payer of last resort, ADAP only serves individuals who have neither public nor private insurance or cannot get all of their medication needs met through their insurance payer. In order to qualify you must prove an HIV/AIDS diagnosis and be below your states income cap to receive this insurance.
AIDS Drug Assistance Programs (ADAPs) are authorized under Title II of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 (reauthorized in 2009). ADAPs are not entitlement programs but are dependent on federal and state discretionary funding, which determines how many clients ADAPs can serve and what levels of service states can provide.
When learning of my co-infection of HIV/HCV I did a lot of research online. How was I going to pay for this treatment, and if I could not afford the medicine, how was I going to get the medicine I needed to stay alive and to stave off a chronic Hepatitis C infection.
During my Hepatitis C treatment I was fortunate to have private insurance which paid for my treatment, but what if I did not have private insurance, or private insurance that did not cover Hepatitis C treatment. Hepatitis C is emerging as a pandemic in cities across the country for those infected with HIV/AIDS, and though most commonly found in people who share needles.. An estimated one-third of people with HIV are also infected with hepatitis C virus (HCV), which is now regarded as a sexually transmitted infection among HIV positive gay and bisexual men. (CROI 2011)
Coinfected individuals tend to experience more rapid liver disease progression than those with HCV alone, and they do not respond as well to interferon-based treatment for chronic hepatitis C. But starting hepatitis C therapy early, during acute infection, can lead to better outcomes. Acute HCV infection is often asymptomatic, but HIV positive men have a better chance of detecting HCV early because they undergo regular liver function monitoring that can reveal HCV-related abnormalities.

These liver function tests can be shown on your lab work as AST and ALT.  A spike in these numbers, or an abnormal reading should prompt your doctor to look into a possible Hepatitis C diagnosis.

About 65% of confected patients with HCV genotypes 1 or 4, and 81% with genotypes 2 or 3, achieved sustained response to interferon-based therapy started during acute infection, researchers reported at CROI 2011.
If you have HIV AND Hepatitis C and wondering if your states ADAP covers Hep C treatment I have done the research for you. 

Below you will find a list of states that do and do not provide Hepatitis C treatment.
If you have further questions about your particular states ADAP funding, simply google ADAP and your state name, or e mail me and I will try to answer any of your questions.

All states ADAP funding including the US Virgin Islands and Puerto Rico cover HIV medications. ****

The follow states do cover Hepatitis C treatment
Alabama
Alaska
Arizona
California
Connecticut
Delaware
District of Columbia
Iowa
Maryland
Michigan
Mississippi
New Jersey
New York
Oregon
Pennsylvania
Puerto Rico
Utah
Virginia
Washington

The following states do not cover Hepatitis C medication
Arkansas
Colorado
FLORIDA
Georgia
Idaho
Indiana
Kansas
Kentucky
Louisiana
Minnesota
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Mexico
North Carolina
North Dakota
Oklahoma
Ohio
South Carolina
South Dakota
Tennessee
Texas
Vermont
Virgin Islands (US)
West Virginia
Hawaii

The following states cover only interferon but not Ribavirin
Illinois
Maine

The following states cover Ribavirin and NOT interferon
Rhode Island

 
****disclaimer: With the current crisis in funding of ADAP programs Nationally; I would advise that you google your states ADAP program and contact information for that program. States are placing people on waitlists to obtain these medications, and are also reducing formularies.

Thoughts, comments, opinions? Please leave a comment below, or you may e mail me with any questions.

Contact: Kevin Maloney
facebook/twitter @RiseUpToHIV

Sunday, April 10, 2011

To test or not to test for HIV

Why should I get tested? There is no way I could ever get HIV.  A condom is used EVERY time. My partner and I are in a monogamous relationship.  I don’t do drugs, and don’t share needles. I’ve only ever had unprotected sex once in my life, and I KNOW he didn’t have HIV.  I’ve never had sex with anyone who looked like they had HIV.  I’m straight, so my risk of contracting HIV is much lower.  I go to my doctor every year, and at times when I am not feeling well.  I get my blood drawn for routine tests and never has my doctor told me that anything was wrong with my blood work.   I have never had any symptoms of HIV.  Even though I don’t use a condom, I would NEVER let anyone cum inside me.  I practice the pull out method.  I only have oral sex.  I am afraid to know the answer.  HIV is a myth. I am immune to HIV. 
To those that think that HIV is a Myth.  You are entitled to your opinion, but I can tell you it is not, and to think your body is immune to HIV, it’s not.  You can ask me and the 33 million others across the Globe who are living with HIV, and we must not forget the 65 million who have died from this dreaded disease Globally, since the epidemic began 30 years ago.  AND to the people who say they use a Condom EVERY time, do you really, or is that just what you say to belay your fears of HIV?
You don’t have to do drugs, and share needles to get HIV, and even though you are a straight white women or male in a monogamous relationship, and your chances for catching HIV are lowered, are you really in a monogamous relationship; how can you be sure? AND even though your chances MAY be lower, they are not zero. AND to those who say they go to their doctor for yearly check-ups and never has the Doctor detected HIV; he won’t unless you have asked him or he has asked you for your permission to do an HIV test.  HIV testing is NOT routine in yearly physical exams, and it cannot be detected in routine blood work.  
Just because you don’t let anyone cum inside you, and practice the pull out method; you are at risk. If you only have oral sex; you are at risk. AND to say you’ve never had sex with anyone who looks like they have HIV, how do you know what someone with HIV looks like? You don’t.  To those who say that they have never had a symptom of HIV; you can have HIV with no symptoms.  MOST people who contract HIV have NO symptoms.  It can take 7-10 years for symptoms of HIV to develop after you have been infected.  By this time your immune system will have become so compromised and an AIDS diagnosis will be very likely.
In the US 1 in 4 of us do not know our HIV status and of the 50,000 new infections, half this number is caused by people who do not know their status. Why is it that people do not know their status? Is it fear, is it that we are afraid that someone will find out, that I will be banished from society and family, it’s the stigma of having HIV isn’t it? For most this is the reason - stigma.  Or, maybe it is that you just don’t care enough about or love yourself enough to want to know?  Maybe you are caught up in a drug addiction, and on a path to self-destruction, and the last thing from your mind is getting tested for HIV.  Or..you do know, and choose not to disclose.
Whether you feel you are at no risk, low risk, or high risk. It’s important to know your status.  To those who have had “what if” moments, and worry that you might have been infected with HIV;  but take no action. Now is the time.  Inaction and silence could = death, and with today’s medicine you do not have to die from HIV and can go on living a very healthy and productive long life.
In many states Doctors are required by law to ask if you would like to have an HIV test, I know here in NY that is the case.  The next time you are asked by your doctor if you would like an HIV test, say yes. Or, find a test location below, or order an FDA approved in-home test kit that you can purchase online, or over the counter at your pharmacy.  Do not belay your fears any longer, and know your status.  My hope for you is that your test will turn out negative, but if it does not, do not hide away from the World and isolate there are NUMEROUS resources  and a ton of support to help you, so that you do not have to suffer in silence.
As someone who tested positive one year ago for HIV AND Hepatits C, it’s been my mission to talk about HIV/HEP C, educate, and get others talking, and tested.  HIV is NOT a myth and NOBODY is immune to it.
Sincerely,
Kevin Maloney
Twitter @RiseUpToHIV


Wednesday, April 6, 2011

German Doctors are confirming a cure for AIDS; April 2011

We have all seen this story circulating. Back on December 15th 2009 German doctors announced they had cured a man with HIV. He had a bone marrow transplant which doctors in Germany claimed cured him of HIV. However, it was not announced as an official cure by german doctores until Aptil 2011.  My friend wanted me to share this link with my viewers, and see his comments below. This does sound promising but, but not a feasable cure option as my friend states below:

unless you want a bone marrow transplant, can find a doctor to do it, a matching donor that carries the gene (1% of the population) your sh*t out of luck. It does not seem like an acceptable cure to me. The man was cured though, but he was treated because he needed the transplant because of his cancer. He happened to have HIV and the donor had the gene, 3 years later the man is still cleared of HIV.

This treatment may get rid of hiv, but heavy chemo often causes cancer years later.

Thanks for sharing this with me. Maybe not a feasable cure (if a cure at all), but maybe this will lead to new research towards the cure.

http://socyberty.com/issues/finally-a-cure-for-aids-found/

Sunday, April 3, 2011

We do what we do, because we care.

To:  Advocates, Educators, Politicians, Medical Professionals, PLWHAS, and to anyone else affected by HIV/AIDS. 
One person cannot do it all alone. It takes the support of others, a team of people with passion, with committment, and perserverance. Zest for life, and for wanting to make a difference in the World. I know I can’t do it all alone.  I am inspired by you, I listen and learn from you, I am motivated by you, I NEED your support.  
Heck, even the President and Governors of States needs their staff to advise them. Yes, The President and Governor may be the ultimate decision maker, but they consult with others, and listen to the American People and through these actions they surmise the best possible plan to put forward.  Sometimes the ultimate decision may come with full confidence, sometimes having to compromise on issues, causing divisions in Government and within our Country.  It is not that they do not care.
This is just how democracy works. There will be decisions we do not like. That we do not understand. Why, why would the President and States make cuts to HIV Entitlement Programs?  Don’t they know that LIVES depend on these programs?  Don’t they know the history of HIV/AIDS, how far we have come, but how much further yet we have to go.  Some people in Government know these answers; some don’t or have become complacent to the cause, and some are just ignorant to this issue.
These are the people we need to reach.  With our advocacy, education, and voices; we can, and we must.  We can tell those in Washington and States throughout the country to not cut HIV entitlement programs, but to keep them fully funded.  Lives depend on these programs.
Will you please take a moment to sign this petition?  Thank YOU for your much needed help and support in spreading the word.
Kind Regards,
Kevin Maloney
"Voices in unity strengthening community" - KM

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My HIV is My Strength; Don't give up! A message of hope.

What a roller coaster of a year. First Diagnosed with HIV in March 2010 and with follow up labs in April 2010 told I had also contracted Hepatitis C genotype 1a (non IV drug user). At the same time I was dealing with an on and off again love affair with methamphetamine. I went away to The Pride Institute to get support with my dual diagnosis and addiction to methamphetamine. I can say it's now been a full year that I have not touched methamphetamine, and the compulsion to use has lifted. I realize I must still remain mindful of my prior addiction, and therefore meet with a talk-therapist on a weekly basis.

In this year I had to give up a job that I loved in NYC (but wasn’t making enough money at) and moved to rural Upstate NY to be closer to family, and especially my ill Mother awaiting a lung transplant. At first I moved into my Father’s house and began treatment for Hepatitis C. Halfway into treatment I moved back to Fort Lauderdale, FL where I had lived 5 years previous. After 2 months in Fort Lauderdale I moved back home because I had problems getting my meds and the healthcare I needed, due to the ADAP Crisis. I moved back into my father’s house, and with the help of an ASO was able to get into my own apartment.

As is often heard and seen with those who are met with such life altering challenges; one of two things can happen. You are either defeated by these challenges or you rise above them and emerge stronger. I chose to rise up above these challenges, because to give into fear would mean that I was powerless and that HIV and my addiction had won.  I may have been powerless at a point in time, but I am no longer.

As my campaign above states, my HIV became my strength. Had I been diagnosed with cancer or another life altering health condition that would have been my strength too! Was I destined to become HIV positive so that I could be a voice in the community, share my experiences, advocate, and help others? Hmmm. Maybe, it makes me wonder if someone had a better plan for me. It's definitely not something I welcomed.

Of course, I would never wish HIV or any illness on anyone, but to those out there who are newly diagnosed with HIV or any illness; you have 2 choices. Give in to your fears and hide away from the world, continue down a path of self-destruction, and just stay silent. Or; educate yourself, reach out to others, find the support and assistance that you need, and speak up. Your voice matters, you matter, and there is a community of support waiting to help you. Take this challenge and use it to re-assess and re-define who you are, what you stand for, and what you want with your life.

Fear, hopelessness, and fatigue diminish the spirit; to combat these feelings. Take a walk around the block, smile more, call an old friend, make a new friend, laugh more, volunteer, eat well, rest, take your meds, meditate, and take a few deep breaths and “begin to design the life you always imagined”.  It may take a bit of time, but be patient with yourself and the process. Soon, you will be standing on your own again, and have re-defined, or rather found that person within you; a human being with so much potential that you never knew how to uncover, or perhaps never knew was there.  

You are somebody and the World is better with you in it!

Be well,

Kevin Maloney
E mail: kevin@riseuptohiv.org

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