Providing health care with dignity

The results are in undetectable = untransmissible; it had been for sometime.  Promotion seems necessary, we are still trying to sell PrEP (Pre-exposure prophylaxis)  that is when people at very high risk for HIV take HIV medicines daily to lower their chances of getting infected… And now we have even better outcomes to share; people with undetectable viral loads cannot pass on HIV to their sex partners.

Lots of people living with HIV have injected  “I’m undetectable“… in their peer conversations.  Imagine how relieve they are to add … “uninfectious which means I will not pass on HIV to  you when disclosing to sex partners.

For the  people who make it their business to inject fear into sexuality and sexual relationships for people living with HIV it will be difficult to embrace the results undetectable = untransmissible .    Many continue to harbor (believe) outdated information on HIV.  The ones who continue to spread unhealthy fear from their places of influence; such as health care workers at HIV treatment sites.  Some are so set in their judgmental behavior  which can breed shame in the clients they serve, and shame is a known enemy of health and recovery…defeating the purpose they are engaged to fill.

Undetectable = untransmissible …mmm.  What does this really mean for women living with HIV?   Will this be motivation to tolerate the side effects of ARVs?

Will access to treatment and care become more accessible?  Health care providers that respect clients/patients and provide dignified treatment and care.  Schedule blood test with the results available in a timely manner and discussed with clients.  Pharmacist that respect your privacy and confidentiality enough to resist making snide remarks to your love ones picking up your prescription.

JCW+ will be having Test , Start and Stay conversations for women living with HIV because it is important that we are in an informed position to take responsibility for our health….and demand a quality standard of care.

In January 2017, the Ministry of Health’s National HIV Programme adopted the 2015 (World Health Organization) WHO guidelines, which recommend that anyone who is diagnosed HIV positive be offered treatment (Test and Start).  Treatment as a method of prevention is another benefit of the WHO new guidelines as more PLHIV are virally suppressed and consequently the risk of transmission is decreased.

According to the announcement made last year at the National HIV Programme annual review and planning retreat, the ‘Test & Start’ initiative anticipates that an additional 1200 new patients will be eligible for treatment.

Current estimates are that over twenty nine thousand persons are living with HIV in Jamaica; but approximately 19% are unaware of their status.

HIV is very much on the priority agenda..it is the approaches to interventions that MUST be adjusted.

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RURAL HIV

We rural women account for a fourth of the world’s total population.

We are leaders, with continuous advocacy efforts for equity and equality.

We are producers of not just children, but we weed and plough the farm lands and work it effortlessly yielding in the crops and taking home the bread just as any man would. The decline in the contributions of women to agriculture, as a result of their own illness or that of family members, can create a substantial drop in agricultural productivity and in some developing countries, women account for as much as 70 percent of the agricultural labour force and an even higher percentage of food production.

We are entrepreneurs. Innovative thinkers and although we sometimes procrastinate, we also make it happen. We are service providers to everyone that comes in contact with us; and it’s not merely because are women but because we rural women face an awful lot of challenges and are more likely to negotiate our demanded result from a situation with whatever resources we have.

With all our attributes and traits though we face many socio-economic needs and sometimes end up in abusive relationships when we seek to have a man in the house to assist us financially. This sometimes lead to us contracting HIV in our endeavors to be all woman, independent and survivors. HIV/AIDS is still highly stigmatized and many women are ostracized. The effects of HIV/AIDS are not only felt at the household level but have wider repercussions, as well. Thus, help from the extended family and the community, their main safety nets, is often severed.

More households are headed by HIV/AIDS widows than widowers, left with the children to care for as men generally have a ‘don’t care’ attitude in regards to their health, refusing to see the doctor and refusing clinical treatment and care. Often times this leads to poverty as family assets and savings may be completely spent, leaving the surviving family members without means of support.

Access to land and support services that could see these women through the hard times are denied them because of their inferior social and legal status in traditionally patriarchal rural societies.

Our contributions are quite vital to the well-being of families; we are most likely to be the ones with the responsibility of caring for the children, the sick, the elderly and the grown ass men in our lives.

Today as we celebrate rural women internationally, we remind them of their importance to their families by extent communities and country’s economy as this depends on us and assertion of the Sustainable Development Goals is impossible without us.

Increase the availability of treatment and care provision in rural areas. Improve educational and social productivity. Help in preventing the spread of HIV and HIV mortality.

#ACT-CARE-COMMIT

#International Day Of Rural Women- October 15

World AIDS Day Carnival

On December 1,  AIDS Healthcare Foundation (AHF) Jamaica in collaboration with the National Family Planning Board (NFPB) and The ASHE Company strengthened by a consortium of NGOs involved within the HIV response in Jamaica, hosted a carnival style road march. That event I just had to attend – on behalf of JCW+ of course 🙂

The march which lasted a little over two hours and saw hundreds of patrons in attendance and begun at the transport terminus in Cross Roads leading all the way to St. William Grant Park in Downtown, Kingston. There were students from schools within the corporate area such as Wolmer’s Girls High School; and even expanded to include those from rural areas such as Morant Bay High School and Seaforth High School – both in St. Thomas, just to name a few. The march also included Conroy Wilson, Executive Director at The ASHE Company; Dr. Chevannes- Vogel , Executive Director at NFPB and Dr. Nkhensani Mathabathe, UNAIDS Country Director for Jamaica, among other persons of stature.

The extravaganza consisted of a marching band and cheerleaders to lead while patrons carried a huge banner to declare the day and our message. The dancers came out in full swing and energized the crowd to move as the music from the Zoukie flatbed trucks was quite electrifying! Let me just say I have two left feet but I did move as the shock wave took over the entire streets – as the saying goes “everybody can dance but ah nuh everybody dancer”. We ALL danced. Catchy dance moves such as breadfruit, save yu self, yeng yeng, among others were taught to those with a desire and while the volunteers sought to hydrate the crowd by distributing water along the way for drinking purposes, it almost turned into a water party as water was being sprayed all over the crowd.

Along the way commuters, passerby and those standing in awe were engaged in conversation and given tops to join the festivity of commemorating love, support and compassion for those with living with and affected by HIV as we seek to halt, reverse and prevent the spread of HIV.

Upon arrival at the St. William Grant Park the marchers were welcomed by Johnny Daley who had been hosting the all day long health fair as he handed over to Emprezz Golding and the Talk Up Youts Crew, who conducted condom challenges for those who can correctly put on a male and insert a female condom. And of course the challenge winners were awarded prizes.

A chill room was available for the youths with a desire to know more about safe sex and condom usage; live coverage was done by RJR communication groups; and mostly basic health checks such as HIV and syphilis testing, cholesterol, blood pressure, etc., were provided for FREE as well self care in the form of hair-do, mani-pedi by volunteers.

Performances to further energize the crowd was done by Devin Di Dakta and T.I.F.A.

Lots to update you on! But despite all the planning and funding pumped into the activity, the success of the march highly depended on the mobilization of patrons from the partners to include but not limited to, The Jamaica Community of Positive Women (JCW+), EVE for Life Jamaica, Family Planning Association of Jamaica (FamPlan), the Ministry of Education, Parent Teacher Association of Jamaica and the commuters that decided on the spur of the moment to grab a t-shirt and join the march for the cause.

 

World AIDS Day march Hands Up For #HIVprevention.

MY NARRATIVE: Amanda/27. Barbados

So, are you open about your status?

Yes and no.

Could you please explain a bit?

Depends on the circumstance. My policies is don’t ask don’t tell unless it’s necessary.

In that case what name would you like to use for its publication?

You can use my middle name Amanda.

What’s your age? And when did you got infected?

I’m 27, I was diagnosed at 15.

How did you find out, and what was your first reaction?

I cried then, I went crazy. I wanted to kill my boyfriend, then I got depressed and over eat because I thought I was going soon get skinny and die.

What things changed because of HIV?

Some things change for the better because I took my goal more seriously, because I thought I didn’t have much time left and there’s so much I wanted to do. But also I had a lot of setback in terms of finding work and studying because of doctor’s appointments and when meds I was getting sick all the time. And I often neglect myself because it’s hard enough trying to prove yourself as a woman. Much less a woman living with HIV. Even though everyone around doesn’t know, I often feel like I have to make up for having HIV.

Have you faced any stigma and/or discrimination? Can you share a specific experience?

Most of the stigma and discrimination I experienced I was a bystander when people were saying thing about those “aids people” or those “sick people” not knowing I’m one of them. Some people in the social services department view “us” as just sitting around waiting for handouts. The most hurtful is when you get close to someone and you tell them and they run from you, or stop speaking to you, or bathe in Clorox because you touched. Or even worse, you’re in a relationship and your significant other wants you to do things to them sexually (eg. oral sex) but they don’t want to because of “your condition”. I’ve had people saying, medical professionals included, “why would you want to punish yourself and an innocent child by having a baby”.  Then the family members who fuss too much, and then those who don’t care at all, and it seem they trying to kill you faster.

How would you describe yourself?

I’m hardworking person, a student, a business woman, a sister, a daughter, a mom, even though I’ve never given birth. I’m kind loving sharing but at times very guarded and withdrawn because life changes when people know.

How are you engage in the HIV response?

I’ve been in too many support group meetings. I’ve often volunteer at the food bank giving out hampers or hosting at the Christmas parties for people living with HIV. I did massage this year for women living with HIV, and there health care providers free of cost for Valentine’s Day. And visit other women whom I know they’re positive, if they become hospitalized and offer an encouraging word or just stay and keep them accompanied. When I’m working at the hospital I trying my best to get assigned to the patients who are like men make sure they have an extra special day and give them information on how best to talk with their doctors and who to take care of themselves when they come out.

What do you dream of?

I want to have my own preventative healthcare center where people living with HIV get special preference. I dream of one day getting married and having the kids I wanted before this happened. I also dream of the day when the fear associated with HIV is like diabetics it something you don’t want to have because of the end results, but if you do, so what. Deal with it, and move on. I believe that the HIV response should be more focused on living with it and the stigma and discrimination; suicides, violence depression, substance abuse and loneliness.

What would you say about your sexuality?

When I was first diagnosed it went away. For almost a year I felt dirty, like some had raped me again, but this time I gave them permission. But I came back stronger than ever, but I keep it under wraps because regular relationships get complicated after sex. Discontent relationships are even worse. And almost all of the guys I met who are positive, are either gay, bisexual, way older than me, or have serious issues (eg. unemployed, uneducated, no ambitions, crazy jealous and abusive).

How do you see HIV in your country?

I see it as a hustle. For some people some people try to get what they can get in the name of helping us poor people. But the bigger heads aren’t concerned about the individual, once condoms and medicine are selling. Who cares about the physical and emotional torment and ostracism we received because we were diagnosed with something. Funny enough in my country our population is very sexually active, but they pretend like there not, until there’s a problem.

MY NARRATIVE: R. Micky/30. Jamaica

“I am 30 years old, and got infected three years ago, at age of 27. I found out by doing a random HIV test and I was astonished, I felt as if my life was over. I became more conscience of what I consumed, especially alcohol, also started having protected sex. Because of HIV, I became more self-driven and determine to become someone.

I became pregnant last year and all was good with the nurses and doctors until I gave birth. The nurse who delivered me had an attitude, at one point, when she came to do my vitals she asked me to placed my hands on my vagina and to don’t touch the equipment. This past march, my baby died. She was premature and have hypertension.

HIV in Jamaica has come a far way and it can only get better. There are lots of support groups and treatment sites here. I attend the chares clinic and I can truly say they are the best service, with you, the patient, in mind, with a friendly and non-discriminating staff.

I am a positive and strong woman, I believe that I can and will make a difference in this life. Failure is not a part of my vocabulary. My dream is to make my mom proud before her life on earth has ended. I intend to open my own private school and daycare.”

Querido VIH III.png

 

 

Vertical

Vertical” was originally published in spanish in january 26th 2016 on Roja Vida by L’Orangelis Thomas Negrón, member of ICW’s Chapter of Young Women, Adolescents and Girls, living in the Hispanic Caribbean, Puerto Rico.

This is the first time I write about The Cure for HIV in my blog. I never before had written on this subject and I had, and still have, some contradictory feelings and thoughts, but things have happened in recent months and I think it’s time.

As you may know, I grew up with HIV and no, I don’t know what  it is live without it, but not for its time in my body, but the time I’ve been aware of its existence in me (since I’m 8 years). HIV is part of the group of things that construct my identity as a human being on this earth and its societies, and has predisposed and put me in situations that, in other ways, possibly haven’t occurred. For better or worse, many of the most important and decisive things in my life, HIV has had an influence. From my closest friends, my most significant works and experiences, thought the way I see the world and understand it. All this and more is due to HIV, and having the thought that the HIV would no longer be part of me, scares me and gives me that loss feeling. It is a kind of Stockholm syndrome, HIV being my kidnapper.

The cure for this syndrome, in my case, I think it would be to realize that there are hundreds of young people who have no access to medication or who simply don’t take it, for any reasons, and they are dying. That doesn’t matter how I may feel when we talk about the lives of hundreds. Currently the only or main alternative we have to keep the virus low, is to take medication, but what do we do with those who no longer have more options? What do we do with those who are weary and tired? I have no answer, but what if we talk about a cure?

The vast majority of global and national strategies are based on the medicalization and condomization of people with HIV or who are “at risk” to reach the “end of AIDS“, not the End of VIH by the way. So, we have strategies that talk about “detect“, “treat” and “suppress“, but not necessarily speak of access to mental health, sexual pleasure, institutionalized and social stigma, free access to information and human rights. People talk about reducing viral load, but suddenly many people make it sounds as easy as lowering the volume of the music, when between the viral load and strategies, are human beings who carries the virus in our blood and medication by our mouths.

Treatment now is prevention, and no, I don’t speak of Truvada as PrEP. I speak that once you’re undetectable, the possibility of transmitting HIV decreases enough to not infect someone else, but God, Buddha, Allah, Pachamama, Krishna and Changó keeps you from having sex without a condom!! It sounds cute “Treatment as Prevention“, but if people will call us irresponsible when we are undetectable and have sex without a condom, so why we even use both words in the same sentence? And I don’t really think it’s because of other STI or pregnancy, because usually strategies are designed to make us less infectious.

Getting tired for a while is valid, and also getting tired indefinitely. For more wishing that people have on young people who grew with HIV, to be 100% adherent, at the end of the day, the ones who places in their mouths the pills and swallow them, are us. When we speak and say “My Body, My Territory” is not only to decide whether or not to abort, it also comes to taking medication or not, going to a protest or not, having sex or not. It’s the right to have alternatives, availability, accessibility and the power to decide on them although the decision is appropriate, correct or NOT.

Not every young person who doesn’t take the medication, do it on purpose or in a conscious manner. Not all the young people who don’t take medication, do so because they have surrendered or because they are irresponsible. The desire to live, to be healthy, to have goals and dreams, is NOT synonymous of adherence. If I think about this, with this co-dependent mindset, it makes me see ourselves as machines of taking medication, it’s makes me feel that we were born to take medication and that no matter what we want, HIV is what determines and decides what is possible for us and what’s not. This kind of view, also makes me feel like if I’m resting us humanity, and that we are nothing more than a diagnosis. And this does NOT mean that I am against medication.

Willing to live is human, just as willing to be healthy, to have goals and dreams, regardless of a diagnosis. Good and bad things will always happen, and there will always be barriers, and because of this reason, it is necessary to develop new strategies and ways to maintain good health and quality of life. Strategies that are based on dignity and participation; shifting the power “over“, for the power “of“, “for” and “with“. Inclusion, because integration is not enough. Empowerment to speak out, instead of lying every time we go to the doctor when we are not adherent, because we don’t want to hear the nagging again (I’ve been listening since he was 15 and has not changed doctor after doctor). Including medication, but also advocate for a cure.

Including medication, but understanding that we are whole beings, and that HIV does NOT have a Velcro that you can take out to treat without having to deal with the rest. Including a cure, which currently does not exist (but that doesn’t mean we won’t ask for one), but it would be a final solution to the deaths among young people. As someone who has grown up with HIV, I get tired and always has complications with adherence. However, I know my body and I stay aware of how I feel, and having this consciousness supports me. But consciousness is not all, I have to keep this present in my mind all the time and that is no simple task, even after all this time. If anything has supported me is to be honest with myself and my health care providers, recognizing which my barriers are, and from that honesty with myself, look for my true alternatives from my reality.

Even if we don’t like it, speaking of adherence it is no longer enough. Much less when we speak of vertical transmission, that although the incidence has declined, those of us who still here, sometimes are the ones having more difficulties, and no wonder. A lot is required, a lot of support, mind and heart, because sometimes it feels like we are in danger of extinction.

#WhatWomenWant

Roja Vida

For a couple of weeks now, I have been collaborating with the campaign #WhatWomenWant. I tweet and retweet many stuff, but never posted an original message. During this days I have been reading “What Women Want” so much that I actually start thinking, what do I want? Like, what do I really want? It was hard to think about it, because sometimes you have in your mind a lot of recycled statements and slogans that you just forget about what you want for you. But this last weeks I have been so full of the “High Level Meeting”, media, university, elections, work and economic troubles, that it was impossible to think about what I really want, and this is it:

What I want is the guarantee that I will be in peace, I want mental health. I want to feel that this is not the wrong decade to be a…

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