The producers say: Growing up in the 1980s and 90s we were hammered with terrifying statistics of HIV/AIDS. Thirty years in, we are still learning. What education do youth receive now and why is the youth infection rate still the highest?

We have seen retrospective documentaries about the AIDS crisis and interviews with survivors but what about the positive youth of today? We aim to feature accessible and inspirational individuals and the often rocky road that they've traveled to get here.

Each of the 4 doc subjects share a dynamic perspective on the reality of living positive. Medical, psychological and educational experts will also weigh in to provide up-to-date facts and a historical context to the reality of living positively.

Our GOAL is to now raise additional funds for the feature length film with an aim to release at film festivals around the world and make available to educational institutions and HIV/AIDS organizations.  This means much needed funds for editing, color correction, sound mix, masters, etc. “

The film’s website is here:

This article first appeared in Sam’s blog - the life and times of a twenty-something living with HIV in the UK -  here.  

In my previous post I talked about my use of technology to aid my quest for love. Dating technology has evolved over time; from dating agencies and singles ads in newspapers, onto phone chat lines, texting services and onto dating/hook-up websites (such as gaydar, fitlads, manhunt etc). The latest technology to be adopted for this purpose is the smartphone – there are countless apps promising to help you find love, make friends or just get a little action.

The most popular one of these (amongst the gay community at least) is Grindr. For those of you who are unfamilar with Grindr – you create a profile with your stats, add a photograph and a short welcome message and in return Grindr shows you other guys logged in near your location by use of GPS. You can message the guys, swap pictures etc. All very cool. I’ve been on Grindr since it was launched. I’ve always been at the cutting edge, trying new apps and gadgets as soon as they come out. My profile has remained largely the same, my age has changed with the years and my photograph has been updated a few times.

I started wondering last weekend (25th Feb 2012) what kind of responses someone would get if their profile said that they were HIV+. So I created myself a second profile on Grindr, almost identical to mine in (but different enough to look like a different person), still looking for “Friends, fun and dates” – but this time I mentioned my HIV status in the profile text.

Over the course of the week (25 Feb – 03 Mar) my existing profile received messages from 74 users. On the other hand my (almost identical) profile that mentions my HIV status had 11 people message it. Four of those eleven messaged purely to ask me questions about HIV and one felt it necessary to send me foul mouthed abuse for seemingly no reason. Which leaves me with six people actually showing an interest in me.

Let’s look at that for a second shall we? That’s a 92% reduction in interest purely by mentioning my HIV status. It was this realisation that led to a few miserable tweets on Saturday night, sorry if you had to put up with those. I thought we were really making progress. The more things change eh?

 Best,

 Sam

You can find Sam on twitter at @UKPositiveLad

Follow the links to Richard T.’s previous posts for PositiveLite.com under "Related Articles" below.

I woke up early and felt like a teenager who had to ring up for their examination results. I normally email my nurse for the results of my blood tests but this time, as I hadn't spoken with her for a while, felt that phoning would be better and a bit more social. So six weeks after treatment began, I have updated my graph with my latest results from the clinic. (see below)

A picture does say a thousand words. For a moment I had to check I input my viral load figure into the correct box as having it as three figures could easily be confused with a CD4 figure. It has fallen from 41,000 to 357. Three hundred and fifty-seven.

My CD4 which measures the strength of my immune system has gone up from 430 to 530. For people who do not have HiV, anything between 500-1200 is 'normal'.

My CD4% which can be a more stable reflection of the state of the immune system has also leapt to an amazing 20%. I've never been 20% before in my HIV life. I have tottered along at 15% or less since diagnosis in October. Whilst I was expecting my viral load to decline, I am amazed at the speed of it and the recovery of my CD4. It's not until I had first-hand experience of the results that I can say the medication works, and fast.

Prior to starting my regime I remember being a bit concerned with the possible side effects. These have been few but now have largely subsided. Taking two tablets a night is becoming part of my life that doesn't dominate my world 24 hours a day.

Having seen these results, to say I was pleased is an understatement. I'm absolutely bloody delighted. As well as these results, I feel better, the aches and pains I had (not helped by winter) have gone and I'm feeling more motivated to get cycling properly again. I'm now starting to think a bit about what lies ahead, and hopefully can start to plan things a bit more for the future.

Finally I wanted to share a quotation I read and noted from one of my many waiting room visits recently which still resonates with me:

"A high tide lifts all boats."

Find Richard T. on twitter at @livingmyposlife

The month of August went from one lazy hot day to the next. I had gone to the beach a few times. I was also invited  to join my friend and her family on a trip they make each year to the Izu Peninsula. It was such a great feeling being in a family setting with such good friends and their kids. We did lots of snorkeling in the ocean. The water was so clear you could see all kinds of fish and plant life.

It was the first time to be away from my home since being diagnosed, and I worried about staying on schedule with my meds. My friend knew my situation and said she too had to take pills every day, and she would help me to stay on track.

It was a great trip for me and it was so nice to have a change of scenery. 

September had arrived and I was excited about the tweetUp coming up. But this month had taken on new meaning for me.  I couldn't help  thinking how sick I was a year ago, not knowing the full extent of my  illness. Such a year, but I had come so far!  I had returned to health and had put on twenty pounds.

Many nights I would reflect on my past situation and felt compelled to write about it. I would have gone to my twitter friend @viraloadwarrior for advice, but he had stopped tweeting and I couldn’t get hold of him. He wrote for Positive Lite.com and I thought maybe I could tell my story there. Another good friend from there was @WayneB54.  Wayne really grabbed my attention when on Fathers Day I tweeted "Happy Fathers Day!" and he was the first to reply back with "Thanks son!"  It threw me for a loop because in real life my fathers name is Wayne, last initial "B."

He was very supportive of the idea of writing, so I contacted two other guys I knew were with PositiveLite.com, Bob and Brian. They  replied back with the go ahead to write my first draft.

I'm not sure if I was expecting such great support of, but now felt like I really should do it. But the more I thought about it, the more I didn't want to do it. These were painful memories.

In any event, the tweetUp was coming up and it made for a convenient distraction. I had got a reservation for holding it in Shibuya  at RED.  I told the manager maybe around ten people. He was fine with my vagueness, since he was a friend. People started tweeting back and forth about it and Frank (left, with Brian)  would refer some of the twitter people to me for details. Kim too was on board about promoting it and, needless to say, my followers on twitter were growing. I was getting really excited about all the people that were taking an interest in it.

For me it was more than just a tweetUp.  It was me celebrating my health. It was me returning to a social life with new friends. It was me thinking of a bad day one year ago in September and it was me making a choice not to let that memory bring me down.

About that time, the company that fired me for having HIV, contacted me about returning on a temporary basis. The teachers were not so keen on the person they found to replace me and  they all wanted me back, once a week, for teaching some of the little kids in the morning  and two after school kids in the afternoon. It was an awkward request. I had much bitterness after they had let me go, but over the course of a year a lot of those feelings had gone. I knew the extra money would help so I took them up on it.

It was strange at first but I soon snapped back into teacher mode.

The day before the Shibuya tweetup I went to RED to update the manager.  I told him I thought the number might be over ten now but less than twenty. He seemed not too concerned and told me we could have the whole area around the bar.

The next day, I wanted to get there early to greet people as they arrived.  Most people stayed on their feet, going from one group and conversation to the next. It was a great social atmosphere. First there were ten, then twenty, and before the night ended we had over thirty people. It was so great to meet so many new people and forge new friendships. There was such a buzz of people visiting it was hard to hear at times.

I felt so excited at the success of the tweetUp.  Many peoplesaud that it was one of the best ones they had ever attended. One twitter friend called @Locohama even wrote about it the next day and posted a video.  The prospect of doing another was already being talked about for around Halloween.

Before I could think about that I knew I wanted to start writing my story. At first I thought I could do it in just one article for PositiveLite.com. However the more I worked on an outline the larger the story got. I was talking about a year’s worth of stories, and this being my final installment, I can say many were never shared.

I was doing so well at the time with my health, mental frame of mind, new friends, etc., that I was finding it difficult to go back and remember much that had happened in that year.  I would write a few sentences and then need to put it down and catch my breath. I wanted my story to be about the people I met, the support I received from family and friends, and how God carried me threw it.

I have met so many great people through this chapter of my life. I am not sure I would change anything. To the people here on twitter and at PositiveLite.com, you have all been truly awesome. You have my forever grateful heart, respect, and prayers.

Thank you!

One final point: I struggled a bit with how to start Part One, and as dorky as it sounded to me, I began to write...

"Pt,1 My first year with HIV . . . I'm just your everyday guy, I'd like to think."

Editior’s Note. Brian, it's been a delight to work with you on this series. We’ve all learned so much along the way, us about Japan, you about grammar. (Kidding). But honestly it’s been a real treat to see you blossom while responding to adversity in such an open and endearing manner.  From all of us here at PositiveLite.com, we send much  love across the miles.

This editorial by Rob Salerno first appeared in Xtra, Canada’s Gay and Lesbian News source, here.

Two weeks ago, I found myself at the Newmarket Health Centre, where Conservative MP Lois Brown was making an announcement of new funding for the AIDS Committee of York Region (ACYR).

It was a tastefully subdued affair. ACYR’s executive director, Radha Bhardwaj, gave a speech outlining the accomplishments of her organization and some of the unique challenges of providing services for HIV-positive people in the sprawling region north of Toronto that’s home to more than one million people.

Brown spoke eloquently of her own relationship with HIV, forged when her mother, a retired nurse, saw the virus emerging in the region and decided to volunteer with patients many other health professionals refused to treat.

Brown then announced that the agency was receiving $162,400 over two years from the Public Health Agency of Canada’s (PHAC) AIDS Community Action Program (ACAP) to fund a “Community HIV Engagement Program,” which will “increase awareness and visibility of the impact of HIV/AIDS in the region and will improve individual, organizational and community-wide knowledge about HIV prevention and transmission,” according to a government press release.

The announcement noted that a big part of the new program will focus on engaging at-risk populations, including the homeless, drug users, youth and immigrant women. Notably absent from the press conference and briefings was any mention of gay men, who still make up the largest cohort of new HIV diagnoses.

But perhaps that’s not surprising. The epidemic is different in York Region than it is in Toronto, ACYR board chair Marnie Sigmar explained to me. More gay men live in the city or would feel more comfortable accessing services there. In York Region, which has the third-highest number of HIV cases in the GTA after Toronto and Peel, the clientele is noticeably more female and immigrant or ethnic minority.

Sigmar seemed very interested in attempting more outreach to gay men but confessed that she isn’t sure how to do that given there aren’t any gay bars or gay neighbourhoods in the region. She said ACYR would try to reach out on social networking sites and the internet.

Shortly before ACYR received its funding, the AIDS Committee of Toronto (ACT) found out it was losing the funding it had received for years from ACAP to run services for women and Portuguese-speakers.

PHAC had reworked the ACAP funding criteria to limit the number of programs a single agency could receive funding for, specifically to spread the money further outside of Toronto, where many older AIDS service organizations have run multiple programs for years.

Again, that shouldn’t be surprising. Toronto is home to 75 percent of Ontario’s 26,000 estimated HIV patients – almost 20,000 people. For comparison, ACYR estimates its client base in the low hundreds.

This isn’t to denigrate the good work ACYR does. Nor do I think it’s as simple as the Conservatives punishing gay downtown Torontonians for not voting Conservative and rewarding the tiny organizations in Tory-friendly suburban ridings — really, do you think HIV workers are a target Tory demo? Besides, the Tories have a third of Toronto’s ridings now, too.

The changing nature of the epidemic requires flexible and dynamic responses from our government and our service providers, and that can be provided only with stable and predictable long-term funding.

Instead, PHAC left agencies across Ontario dangling for months, then hastily issued a call for funding over the Christmas holidays, leaving organizations with little time to table serious new proposals.

I’m unconvinced that a province-wide wellness retreat for HIV-positive women or services for lusophones are the best use of limited public funding to fight HIV, but by keeping ASOs in the dark and limiting their number of applications, the government hobbled their ability to respond to the epidemic in new and better ways.

The result will likely be increased stresses on AIDS services in Toronto, decreased awareness in the epicentre of the crisis, and a resulting increase in the HIV caseload in Toronto.

PHAC and Health Minister Leona Aglukkaq should be ashamed.

See also Xtra’s other articles on this topic

• Federal cuts force ACT to cancel programs 

• Federal HIV/AIDS funding falls short 

(PositiveLite.com Editor’s note; This article mentions the cuts to ACT’s programming. The full extent of cuts to funding of other ASO’s in Toronto and across the country resulting from this last round of PHAC funding requests is not yet known. PHAC will not provide this information. This information is currently being gathered by the HIV community. PositiveLite.com will report this information as soon as it becomes available to us.) 

Editor’s note:  The most eye-catching piece of information here – and this is new - is the statement that if you’re living with HIV, over 50 years of age and haven’t yet started antiretroviral (ARV) therapy, the U.S. Department of Health and Human Services now recommend HIV treatment, regardless of your CD4 cell count.

PositiveLite.com discussed the guidelines relating to the general  HIV-positive population here. Today we focus specifically on the section relating to HIV and aging.

The complete text of that section is here. Note that while its primary intended audience is the medical profession, it’s written in language reasonably intelligible to all.  Whether these US guidelines will be taken up outside the US was discussed in our previous article, referred to above.

Key Considerations When Caring for Older HIV-Infected Patients

Summary

Antiretroviral therapy (ART) is recommended in patients over 50 years of age, regardless of CD4 cell count, because the risk of non-AIDS related complications may increase and the immunologic response to ART may be reduced in older HIV-infected patients.

 • ART-associated adverse events may occur more frequently in older HIV-infected adults than in younger HIV-infected individuals. Therefore, the bone, kidney, metabolic, cardiovascular, and liver health of older HIV-infected adults should be monitored closely.

• The increased risk of drug-drug interactions between antiretroviral (ARV) drugs and other medications commonly used in older HIV-infected patients should be assessed regularly, especially when starting or switching ART and concomitant medications.

• HIV experts and primary care providers should work together to optimize the medical care of older HIV-infected patients with complex comorbidities.

 • Counseling to prevent secondary transmission of HIV remains an important aspect of the care of the older HIV-infected patient.

The Background

Effective antiretroviral therapy (ART) has increased survival in HIV-infected individuals, resulting in an increasing number of older individuals living with HIV infection. In the United States, approximately 30% of people currently living with HIV/AIDS are age 50 years or older and trends suggest that the proportion of older persons living with HIV/AIDS will increase steadily. Care of HIV-infected patients increasingly will involve adults 60 to 80 years of age, a population for which data from clinical trials or pharmacokinetic studies are very limited.

There are several distinct areas of concern regarding the association between age and HIV disease. First, older HIV-infected patients may suffer from aging-related comorbid illnesses that can complicate the management of HIV infection, as outlined in detail below. Second, HIV disease may affect the biology of aging, possibly resulting in early manifestations of many clinical syndromes generally associated with advanced age. Third, reduced mucosal and immunologic defenses (such as post-menopausal atrophic vaginitis) and changes in risk behaviors (for example, decrease in condom use because of less concern about pregnancy and increased use of erectile dysfunction drugs) in older adults could lead to increased risk of acquisition and transmission of HIV. Finally, because older adults generally are perceived to be at low risk of HIV infection, screening for HIV in this population remains low. For these reasons, HIV infection in many older adults may not be diagnosed until late in the disease process. This section focuses on HIV diagnosis and treatment considerations in the older HIV-infected patient.

 HIV Diagnosis and Prevention

Even though many older individuals are engaged in risk behaviors associated with acquisition of HIV, they may be perceived to be at low risk of infection and, as a result, they are less likely to be tested for HIV than younger persons . According to one U.S. survey, 71% of men and 51% of women age 60 years and older continue to be sexually active, with less concern about the possibility of pregnancy contributing to less condom use. Another national survey reported that among individuals age 50 years or older, condoms were not used during most recent intercourse with 91% of casual partners or 70% of new partners]. In addition, results from a CDC survey show that in 2008 only 35% of adults age 45 to 64 years had ever been tested for HIV infection despite the 2006 CDC recommendation that individuals age 13 to 64 years be tested at least once and more often if sexually active.

Clinicians must be attuned to the possibility of HIV infection in older patients, including those older than 64 years of age who, based on CDC recommendations, would not be screened for HIV. Furthermore, sexual history taking, risk-reduction counseling, and screening for sexually transmitted diseases (STDs) (if indicated), are important components of general health care for HIV-infected and -uninfected older patients.

Failure to consider a diagnosis of HIV in older persons likely contributes to later disease presentation and initiation of ART. One surveillance report showed that the proportion of patients who progressed to AIDS within 1 year of diagnosis was greater among patients >60 years of age (52%) than among patients younger than 25 years (16%). When individuals >50 years of age present with severe illnesses, AIDS-related opportunistic infections (OIs) need to be considered in the differential diagnosis of the illness.

 Initiating Antiretroviral Therapy

Concerns about decreased immune recovery and increased risk of serious non-AIDS events are factors that favor initiating ART in patients >50 years of age regardless of CD4 cell count. (See Initiating Antiretroviral Therapy in Treatment-Naive Patients. ) Data that would favor use of any one of the Panel’s recommended initial ART regimens (see What to Start) on the basis of age are not available. The choice of regimen should be informed by a comprehensive review of the patient’s other medical conditions and medications.

A noteworthy limitation of currently available information is lack of data on the long-term safety of specific antiretroviral (ARV) drugs in older patients, such as use of tenofovir disoproxil fumarate (TDF) in older patients with declining renal function. The recommendations on how frequently to monitor parameters of ART effectiveness and safety for adults age >50 years are similar to those for the general HIV-infected population; however, the recommendations for older adults focus particularly on the adverse events of ART pertaining to renal, liver, cardiovascular, metabolic, and bone health .

HIV, Aging, and Antiretroviral Therapy

The efficacy, pharmacokinetics, adverse effects, and drug interaction potentials of ART in the older adult have not been studied systematically. There is no evidence that the virologic response to ART is different in older patients than in younger patients. However, CD4 T-cell recovery after starting ART generally is less robust in older patients than in younger patients. This observation suggests that starting ART at a younger age will result in better immunologic and possibly clinical outcomes.

Hepatic metabolism and renal elimination are the major routes of drug clearance, including the clearance of ARV drugs. Both liver and kidney function may decrease with age, which may result in impaired drug elimination and drug accumulation. Current ARV drug doses are based on pharmacokinetic and pharmacodynamic data derived from studies conducted in subjects with normal organ function. Most clinical trials include only a small proportion of study participants >50 years of age. Whether drug accumulation in the older patient may lead to greater incidence and severity of adverse effects than seen in younger patients is unknown.

HIV-infected patients with aging-associated comorbidities may require additional pharmacologic intervention, making therapeutic management increasingly complex. In addition to taking medications to manage HIV infection and comorbid conditions, many older HIV-infected patients also are taking medications to ameliorate discomfort (e.g., pain medications, sedatives) or to manage adverse effects of medications (e.g., anti-emetics). They also may self-medicate with over-the-counter medicines or supplements. In the HIV-negative population, polypharmacy is a major cause of iatrogenic problems in geriatric patients. This may be the result of medication errors (by prescribers or patients), nonadherence, additive drug toxicities, and drug-drug interactions. Older HIV-infected patients probably are at an even greater risk of polypharmacy and its attendant adverse consequences than younger HIV-infected or similarly aged HIV-uninfected patients.

Drug-drug interactions are common with ART and easily can be overlooked by prescribers. The available drug interaction information on ARV agents is derived primarily from pharmacokinetic studies performed in a small number of relatively young, HIV-uninfected subjects with normal organ function. Data from these studies provide clinicians with a basis to assess whether a significant interaction may exist. However, the magnitude of the interaction may be different in older HIV-infected patients than in younger HIV-infected patients.

Nonadherence is the most common cause of treatment failure. Complex dosing requirements, high pill burden, inability to access medications because of cost or availability, limited health literacy including lack of numeracy skills, misunderstanding of instructions, depression, and neurocognitive impairment are among the key reasons for nonadherence. Although many of these factors likely will be more prevalent in an aging HIV-infected population, some data suggest that older HIV-infected patients may be more adherent to ART than younger HIV-infected patients.

Clinicians should assess adherence regularly to identify any factors, such as neurocognitive deficits, that may make adherence a challenge. One or more interventions such as discontinuation of unnecessary medications; regimen simplification; or use of adherence tools, including pillboxes, daily calendars, and evidence-based behavioral approaches may be necessary to facilitate medication adherence. (See Adherence to Antiretroviral Therapy.)

Non-AIDS HIV-Related Complications and other Comorbidities

With the reduction in AIDS-related morbidity and mortality observed with effective use of ART, non-AIDS conditions constitute an increasing proportion of serious illnesses in ART-treated HIV-infected populations. Heart disease and cancer are the leading causes of death in older Americans. Similarly, for HIV-infected patients on ART, non-AIDS events such as heart disease, liver disease, and cancer have emerged as major causes of morbidity and mortality. Neurocognitive impairment, already a major health problem in aging patients, may be exacerbated by the effect of HIV infection on the brain. That the presence of multiple non-AIDS comorbidities coupled with the immunologic effects of HIV infection could add to the disease burden of an aging HIV-infected person is a concern. At present, primary care recommendations are the same for HIV-infected and HIV-uninfected adults and focus on identifying and managing risks of conditions such as heart, liver, and renal disease; cancer; and bone demineralization.

Discontinuing Antiretroviral  Therapy in Older Patients

Important issues to discuss with aging HIV-infected patients are living wills, advance directives, and long-term care planning including financial concerns. Health care cost sharing (e.g., co-pays, out-of-pocket costs), loss of employment, and other financial-related factors can cause interruptions in treatment. Clinic systems can minimize loss of treatment by helping patients maintain access to insurance.

For the severely debilitated or terminally ill HIV-infected patient, adding palliative care medications, while perhaps beneficial, further increases the complexity and risk of negative drug interactions. For such patients, a balanced consideration of both the expected benefits of ART and the toxicities and negative quality-of-life effects of ART is needed.

Few data exist on the use of ART in severely debilitated patients with chronic, severe, or non-AIDS terminal conditions. Withdrawal of ART usually results in rebound viremia and a decline in CD4 cell count. Acute retroviral syndrome after abrupt discontinuation of ART has been reported. In very debilitated patients, if there are no significant adverse reactions to ART, most clinicians would continue therapy. In cases where ART negatively affects quality of life, the decision to continue therapy should be made together with the patient and/or family members after a discussion on the risks and benefits of continuing or withdrawing ART.

Conclusion

HIV infection may increase the risk of many major health conditions experienced by aging adults and possibly accelerate the aging process. As HIV-infected adults age, their health problems become increasingly complex, placing additional demands on the health care system. This adds to the concern that outpatient clinics providing HIV care in the United States share the same financial problems as other chronic disease and primary care clinics and that reimbursement for care is not sufficient to maintain care at a sustainable level . Continued involvement of HIV experts in the care of older HIV-infected patients is warranted. However, given that the current shortage of primary care providers and geriatricians is projected to continue, current HIV providers will need to adapt to the shifting need for expertise in geriatrics through continuing education and ongoing assessment of the evolving health needs of aging HIV-infected patients. The aging of the HIV-infected population also signals a need for more information on long-term safety and efficacy of ARV drugs in older patients.

Please refer to the guidelines themselves, for a complete list of references.