The butcher’s bill being served because of the global food crisis isn’t surprising. The World Food Program (WFP), UNICEF, and a legion of NGOs managing famines ranging from Venezuela to South Sudan all warned the world that the wolf was at the door months before Putin decided to add a new chapter to the encyclopedia of atrocities.

The intersection of COVID-19, HIV, TB, and malaria; international conflicts fueled by proxy fights leveling cities; as well as domestic political chasms continue to over-burden the world’s emergency response resources. The warnings were sounded as loud as the air raid sirens in Ukraine as far back as 2019, when it became clear that climate change, overpopulation, and the resurgence of the Cold War were going to be the genesis of a new round of global famine. Jeannie Wraight’s article in A&U magazine last October discussed the challenges addressed in international policies affecting access to RUTFs for acute malnutrition (SAM).

The World Health Organization’s (WHO) report in 2020 noted that 149 million children under five were estimated to be stunted, and an estimated 45 million were suffering from wasting. It is estimated that over eighteen million children under age five are affected by the most extreme form of malnutrition, SAM, and are 12 times more likely to die than well-nourished children.

“Despite the number of people needing aid having already risen by more than 1 million to 17.4 million this year and estimated to rise by more than 1 million by the end of 2022, the WFP identified a food aid funding gap of $900m (£686m). Only 11% of its funding target has been met,” stated David Beasley, Executive Director of the United Nations World Food Programme. “We’ve got now 45 million people in 38 countries that are knocking on famine’s door. And you may see a general price increase of food, let’s say 38 to 40%, but in some very tough places like Syria, it’s going to be 100% to 200%. In Yemen, we’ve already cut rations to eight million people, about 50%, in Chad, Niger, and Mali. We already see an incredible number of people talking about migrating from Central America into the United States … If we don’t get the food that we need to reach the people in need, whether it’s in the Middle East, Northern Africa, or Central America, you’re going to have famine and you will have destabilization of nations and then mass migration. And this will cost a thousand times more than if we can get the food before they either die or create political unrest.”

The Biden administration has implemented plans to increase international aid beyond the previous administration’s efforts. That includes $58.5 billion for the State Department and U.S. Agency for International Development for bilateral economic assistance, which the administration proposes to spend $28.1 billion in fiscal 2022.

Also included in enhanced planning is funding for multilateral aid programs, such as the Global Health Program managed by the U.S. Agency for International Development, rising from $1.45 billion to $3.5 billion, and contributions such as the International Development Corporation and the African Development Fund, to $3.1 billion. The announcement of the Biden Administration in March, to defend global food security and provide more than $1 billion in new funding towards humanitarian assistance for those affected by Russia’s war in Ukraine, over the coming months.”

The limited tools for addressing famine are too familiar to the legions of international disaster organizations addressing generations of turmoil in low- and middle-income countries. One of the leading ways to cauterize clinical manifestations of acute malnutrition is Ready-to-Use Therapeutic Food (RUTF). The hundreds of organizations involved in famine relief — Partners in Health, World Vision, Doctors Without Borders, UNICEF, the International Rescue Committee, Red Cross, and many others — are all at a crossroads in this cornucopia of catastrophe. And while a new generation of NGOs has helped during the current crisis, World Central Kitchen (WCK) has emerged as the leader in addressing famine in Ukraine. To date, WCK has delivered over 25 million meals, including increased kitchen response and presence during the conflict in Ukraine. Team Rubicon, an international disaster response organization also on the front lines of the crisis in Ukraine, is providing medical teams who will be amongst the first to encounter widespread SAM in Europe for the first time in decades.

The specter of the war in Europe on the nightly news echoes Dublin in 1847, Berlin in 1918 during the Blockage, and the Dutch Hunger Winter. The common denominator of all these war-related famines: civilians, and especially children, starve. Mothers starve while entire families are eviscerated by the lack of nutrition and accompanying disease. Aid often arrives too late to save the most vulnerable. With all its bloodshed and trauma, Ukraine’s conflict is unraveling what’s left of the fabric of global food security. Ukraine’s Ministry of Agriculture has indicated that 30% of the country’s farmland is occupied or unsafe. The war’s disruptions have led to surging prices and raised fears of food shortages in parts of the developing world. Before the Russian invasion, the country was responsible for 12% of global wheat exports, 16% of global corn exports, and 46% of global sunflower oil production. Economists are looking at the immediate numbers — countries like Indonesia, Bangladesh, and Egypt, which import significant amounts of wheat from Ukraine, are realizing stark realities about their food supplies. It will take years, even decades, for the commodities market to normalize.

Before the war in Ukraine, Congress had introduced the Global Malnutrition Prevention and Treatment Act (HR 4693) sponsored (S.2956/H.R.4693). The effort was led by Senator Christopher Coons (D-DE) and Representative Gregory Meeks (D-NY), Chair of the House Committee for Foreign Affairs, who had a long record of working with the United States International Development Agency (USAID) to support countries in addressing global famine.

A relatively new source of funding to incentivize the private sector to address gaps in the delivery and improvement of RUTFs and to develop other tools for treating and preventing malnutrition is the U.S. International Development Finance Corporation (DFC) — through Samantha Power, Administrator of the United States Agency for International Development (USAID) — which is increasing coverage for high impact, proven and affordable interventions. Those efforts include research on next-generation therapeutic foods to treat severe acute malnutrition (SAM), which is the leading cause of death of children worldwide, accounting for more than three million deaths annually. Child death from malnutrition and starvation are expected to increase exponentially in 2022.

RUTFs are essential public health commodities for resource-poor settings to clinically address multiple disease states exacerbated by the physiological effects of famine. In addition to RUTFs, Humanitarian Daily Rations (HDR) are a critical part of humanitarian nutrition to feed large populations of displaced persons or refugees under emergency conditions. A single HDR is designed to provide a full day’s sustenance to a moderately malnourished individual. Current supply chain and transport challenges further prohibit the distribution of HDRs.

Implications of global food insecurity for national defense posture at the time of writing this article:

• ETHIOPIA – 25.9 million estimated people in need of humanitarian assistance in Ethiopia, 844,589 estimated refugees in Ethiopia, 4.5 million acutely malnourished (source: USAID Fact Sheet https://www.usaid.gov/sites/default/files/documents/Ethiopia_Fact-Sheet_Nutrition_Oct-2020.pdf)

• UKRAINE – Ukraine has the second largest HIV epidemic in the region, with nearly 250,000 people living with HIV (PLHIV) – many of whom do not know their HIV status. As of July 2022, 12 million Ukrainians have been displaced, with five million going to neighboring countries and seven million people thought to be displaced within Ukraine (source: USAID Fact Sheet https://www.usaid.gov/ukraine/fact-sheets/health)

• AFGHANISTAN – 2.5 million Afghans displaced to different countries, 2.2 million Afghans are severely food insecure, with over 700,000 Afghans internally displaced (source: USAID Fact Sheet https://www.usaid.gov/sites/default/files/documents/1866/afghanistan_ce_fs04_09-30-2014.pdf)

RUTFs are part of the overarching approach to meeting the millennium development goals (MDGs) developed by the United Nations. A study by Verified Market Research in 2021 identified the worldwide revenues for RUTFs at $363.72 million in 2019 and growing to $807.89 million by 2027, expanding at a CAGR of 10.5% for the forecast period. According to the UN report on Implications of Ready to Use Therapeutic Food for Children in Low-Income Countries, “One thousand metric tons of RUTF treats approximately 76,500 children for about 3.6 million USD (based on an average price of $50 per 150-sachet carton at approximately 13.8 kg per carton).”

The most commonly recognized RUTF being distributed, Plumpy’Nut, a peanut-based paste for treatment of severe acute malnutrition by French company Nutriset, had set the standard for other commercially available products in the field before new generations of RUTFs began coming to market. MANA is a RUTF composed of peanut paste, milk, and a special mix of vitamins and minerals designed to meet a child’s basic nutritional needs and provide nutrition and calories. The third leading RUTF on the market was developed with funding from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) and technical support from the Food and Nutrition Technical Assistance III Project (FANTA), the Institut de Recherche pour le Development (IRD), Vietnam’s National Institute of Nutrition (NIN), and UNICEF. This rice/soy/mung bean-based RUTF is produced in Vietnam and offered as an alternative to the peanut-based Plumpy’Nut. The product is known as “High-Energy Bar for Integrated Management of Acute Malnutrition” (HEBI). Another RUTF, BP100, manufactured by GC Reiber, is delivered as a biscuit that can be made into a porridge. It serves as a fortified food rehabilitation diet for the malnourished but with a higher energy density with a four-year lifespan.

SUSTAINN (Superior Utility Supplementation Therapeutic Agent for Indicated Nutritional Needs) is being developed by AREV Life Sciences, based in Vancouver. This initiative aims to demonstrate the delivery of measurable therapeutic effect in forthcoming inferiority/superiority studies through a unique next-generation RUTF composition. SUSTAINN is intended to treat inanition, the complex disease state that is currently the culprit in the deaths of nine million people worldwide annually, according to the international relief agency Mercy Corps; more than the death toll of AIDS, malaria, and tuberculosis combined. Inanition is clinically characterized by dysbiosis, environmental enteropathy, neurodegenerative disease, organ failure, scurvy, beriberi, Kwashiorkor, and anemia due to SAM.

Innovations in RUTFs have demonstrated significant clinical benefits. Supporting neurological growth and function through the provision of essential fatty acids (“EFA”) in SAM patients was studied in a randomized, triple-blinded, controlled clinical trial by Wiley and published in the British Journal of Nutrition. This trial demonstrated that DHA Omega-3 supplements boost cognition in malnourished Malawian children. Low linoleic acid foods with added DHA given to Malawian children with severe acute malnutrition improve cognition.

Another initiative by Evolve BioSystems, in collaboration with the International Centre for Diarrheal Disease Research, Bangladesh, announced a study of Evivo® in infants recovering from SAM, an activated form of the beneficial bacteria Bifidobacterium to restore essential bacteria to the gut microbiome. The study conducted at Dhaka Hospital in Bangladesh of infants under six months diagnosed with SAM, as well as non-malnourished infants under six months of age who are hospitalized for infections, is supported by the Bill & Melinda Gates Foundation.

Since 2015 the global community has established specific measurements of improvement greatly needed in nutrition. The World Health Assembly, with 194 countries representing, committed to ending “all forms of malnutrition” by 2030 as part of the Sustainable Development Goals (SDGs). SDGs are a focus at the Global Nutrition for Growth (N4G) conference. As of December 2020, more than $3B in financial commitments were verified from various stakeholders, including the Government of Canada, Pakistan, World Vision International, and UNICEF. The World Bank Guidelines within the Codex Alimentarius addressed using RUTFs this past year. The Codex Committee on Nutrition and Foods for Special Dietary Uses agreed on a new guideline on RUTFs to serve as a reference for governments in best practices for treating childhood wasting. The Codex ensures that RUTFs are effective and enable recovery and growth of children with wasting.

Data presented in peer-reviewed publications demonstrate the limited clinical utility of current RUTF formulas. The data suggest these are more accurately categorized as Ready to Use Supplemental Foods (RUSFs) rather than RUTFs. Despite Community-Based Management of Acute Malnutrition (CMAM) being World Vision’s core project model in nutrition, it’s not without complications. CMAM is a methodology for treating SAM using a triage approach. Further driving the challenges facing access to RUTFs are aflatoxins, currently present in the primary peanut-based RUTFs on the market. The Global Action Plan on Child Wasting (GAP report), created November 2021 by UNICEF and commissioned by the UN Secretary-General, outlines a key priority to support efforts to prevent and reduce aflatoxin and other toxins in therapeutic foods.

The COVID-19 pandemic and the supply chain disruption would have been horrific enough to shake the fragile foundations of global food security. Afghanistan has experienced unprecedented famine; the siege of Tigray left numerous people starving to death and displaced; and Yemen has become a hole in the collective soul of the 21st century that may never heal. Not since World War II has Europe faced the kinds of brutality that are now part of our daily diet as if the war in Bosnia had not happened. The center cannot hold without more resources and bold action necessary to change the course of malnutrition and its comorbidities. RUTFs, along with every other tool in the international public health toolbox, are our best hope.

Special thanks to Sateesh Apte, MD, and Frank Moresca for contributing to this article.

This article originally appeared in healthhiv.org

David Miller

It’s been more than a decade since, in 2007, a German oncologist named Dr. Gero Hütter performed a risky surgical procedure on a willing patient with both HIV and leukaemia that would result in the first and only person to date cured of HIV. In the years since, the details of the procedure have been well documented, publicized, and scrutinized, leaving little doubt that Timothy Ray Brown (formerly known as the “Berlin Patient”) has indeed been cured of HIV (and leukaemia).

Although successful, Timothy Ray Brown’s treatment may provide proof of concept but not a functional way to generalize the cure to a widespread population of people living with HIV. It remains unclear whether Brown’s cure methodology could be replicated at all, given similar circumstances and unlimited funds. To date, it sadly has not.

The procedure is relatively simple to understand. The immune system is destroyed by using chemotherapy and radiation, killing the HIV, and the cancer along with it. Blood cord cells (transplanted bone marrow cells) from a compatible donor are then used to rebuild the immune system. In Brown’s case, these cells were donated by a man with a genetic mutation that confers resistance to HIV, as the mutation of the CCR5 “doorway” that HIV typically uses to enter and infect a cell is physically incompatible with the virus.

This procedure is not without risk; one in every five people who undergo a regular blood cord transplant do not survive. Brown received his HIV cure because his leukaemia was life threatening, necessitating radical intervention. Dr. Hütter struck upon the idea of using stem cells resistant to HIV, as well as matched for blood-type, for the transplant

It is astounding that more than a decade after the successful cure of one person, it has neither been replicated nor inspired a precise medical breakthrough for curing other people infected, if not hundreds, thousands, or millions. Brown continues to live as the only person granted a new and hopeful future. He has become iconic as a symbol of hope in this pandemic.

With thousands of clinicians, scientists, researchers, doctors, bureaucrats, and activists working hard to advance an HIV cure strategy, will AIDS 2018 go down in history as a turning point in the struggle for the cure? We can only hope. Timothy Ray Brown often speaks of feeling lonely as the singular cured person; many would love to stand with him – and give him company.

This article originally appeared in PanAware

If you’d like to help in the fight to find a cure for HIV but aren’t sure how to go about it, this month’s edition of Destination: Cure is dedicated to you. Together we can help end HIV through education, dedication, and action.

HIV cure activism and advocacy is relatively new. Presently most cure activists have long histories in AIDS treatment activism. But whether you have years of experience or would simply like to become involved, there are ways for all of us to help in the fight for an HIV cure by becoming involved in advocating for cure research, cure funding, or cure legislation and policy.

Unfortunately there is no road map to cure activism/advocacy. As you learn and become involved, the more opportunities to participate and take action will present themselves. But where to start?

Advocacy at your fingertips

Here are some resources that can help you become familiar with various aspects of the search for a cure. Also listed below are some ideas of actions you can take right now.

Project Inform: Project Inform’s “HIV Cure Advocacy” section maintains numerous articles on HIV cure research, advocacy, and clinical trials. Website

TAG: Treatment Action Group’s “Cure-Related Research Resources” provides links to cure related publications, meetings, conferences and other resources. Website

NATAP: Search “HIV cure” in the National AIDS Treatment Advocacy Project’s (NATAP) site search box for tons of valuable and informative articles. Website

IAS: Learn about the global scientific agenda with the International AIDS Society’s “IAS Towards an HIV Cure” project. Website

First steps you can take

Here are some simple things you can do right now to help advance us towards a cure.

AIDS Policy Project: Join the AIDS Policy Project in fighting for a cure. Sign up to receive updates on reports, events, and ways to participate. Its report, “AIDS Cure Research for Everyone,” is an excellent beginner’s guide to understanding some of the issues around HIV cure funding.

AIDS Cure Day: The AIDS Policy Project has organized the first AIDS Cure Day which will take place on Saturday, October 5, 2013. You can help make this day a success and an annual event by participating and supporting this effort. The AIDS Policy Project has scheduled teach-ins and will help you to organize your own event. Use this day to tell the world we need a cure. Mark the day by participating in scheduled events or organize one of your own. Share information on Facebook and other social media, grab a few friends and talk about the cure, have a discussion online or find another way to commemorate the day. Together we can make this a day the world’s attention will be on the need and struggle for a cure for HIV.

Regulations.gov: Regulations.gov is a Web site where you can give your opinion on the development of federal regulations and other related issues. Type “HIV Cure” into the search engine and it will give you a list of issues open for public comment. This is a great opportunity to tell the FDA or other governmental agencies your thoughts or bring up concerns you may have. Check back continuously to view new public comment options.

Researchmatch.org: Clinical trial participation is vital in cure studies. Researchmatch.org is a Web site that matches people with studies they can participate in. Signing up is quick and simple. If an HIV cure study comes up that you may be right for, they will contact you. This could mean answering some questions or testing a new drug (if you, your doctor, and the study coordinator agree the study is a good match). You may have some unique qualification that researchers need. Signing up does not mean that you are automatically agreeing to participate in any clinical trial or study.

Literacy works!

Early drug development: Drugs in early stage development made by small biotech companies are often lost in the pipeline due to a lack of funding. Research these drugs, share information about them, and advocate for funding for clinical trials for these potential therapies. Novel drugs not financially supported by Big Pharma are much less likely to make it through clinical development but some of these drugs attack HIV in unique and powerful ways and may be potential functional cures. If you’re interested in treatment activism, consider focusing your efforts on preclinical/Phase I/early Phase II therapies. Specific drugs to support will be mentioned in future columns.

Write your Congressperson: E-mail or call your Congressional Representative and tell them to support efforts for a higher level of HIV cure funding. You can search for new bills for cure research at Thomas.loc.gov and find contact information for your representative at house.gov/representatives.

Keep an eye on this column for more information, vital resources, events, and engaging discussions.

This article is reprinted with permission from A&U Magazine.

Originally published on PanAware on Wordpress.com on January 21, 2014. By Jeannie Wraight.

You may experience many fears and emotions such as guilt, embarrassment and fear of rejection, but remember that this is something the large majority of people with HIV encounter and you are not alone. Before you consider what your partners reaction is going to be, you need to make sure that you are okay and prepared for this difficult task.

Reach out to other people with HIV or a counselor – There are many organizations, local support groups and on-line groups and forums where you can talk to others about how they have handled disclosing their status to a new or existing partner. Here are a few on-line groups and forums that may be helpful.

• The Body Forums: http://www.thebody.com/cgi-bin/bbs/ubbthreads.php

• POZ I AM:

http://community.poziam.com

• HIV/AIDS Tribe:

http://www.hivaidstribe.com

Learn all you can about HIV. Have printed material on hand to provide and suggest they do their own research. Be prepared to discuss HIV transmission. What are the real risks? What are your options for prevention? Know the probability of infection, how to prevent it and what is safe and what is not. Remember to learn about how an undetectable viral load decreases the risk of HIV transmission. This may be a conversation that could take place later or your partner may want to know what their risk is right away.

Decide on the right time and place. Make sure you pick a location that feels safe and comfortable for you both. Try to choose a time when you and your partner are in a good mood. Next think about what you are going to say. Plan out how the conversation may go. What might your partners reaction be? How will you handle each type of response? Your delivery can influence his/her acceptance of and reaction to what you say. If you’re calm and collected they might be as well. If you act as if it’s the end of the world, they might agree that it is. Allow a conversation to take place rather than doing all of the talking yourself. Encourage him/her to ask questions so you can know what they are thinking and feeling.

After you’ve said what you need, be aware that you will not be able to control his/her reaction, that’s why your delivery is so important. Try to guide how they hear what you’re telling them… HIV is no longer a death sentence… The risk of transmission can be controlled. Make sure you stress these points so they are walking away with facts. He/she might need time to himself at first. Be prepared that you may not get a yes or no answer immediately. They might want to break up right then and there, or they might handle the news well. Whatever their reaction, know that they have a right to their feelings and to the time needed to sort them out. It took you time to let the news of your HIV status sink in, it may for your partner as well.

If they do not react well don’t take their reaction completely personal. It is not just about you or you and he/she but about HIV. It is a lot to take in and they are going need time to adjust. Your partner may assume the worst and may blame you for possibly spreading the disease. It is important that you discuss these feelings with each other in an open and honest way, perhaps with a licensed counselor. Be prepared for possible rejection. Understand that not everyone is willing to deal with the risk of transmission, stigma and/or being in a relationship with someone who may get sick. This is their prerogative. It does not make them a bad person. They have the right to chose how they will live their life and what risks they are willing to take. Remember that there are lots people out there and many, many people will look past your HIV status.

Urge your partner to get tested. Assuring that they are healthy or seek treatment if they are already HIV positive is imperative. Approximately 20% of people with HIV are unaware of their status. If you are yet to be intimate, you should know if they are already HIV positive. If you continue the relationship and down the line they test positive, you will be setting yourself up for a lot of emotion and guilt when they may already have been HIV positive. If you have been intimate and they have become infected from you this is also extremely important to know. Either way, they will need to seek care and treatment immediately if they are already HIV positive.

If your partner has a history of violence it may be better to have someone there when you tell them. A friend, a counselor or a doctor can provide you the safety and support you may need to make disclosing your HIV status easier.

Legal

If you are considering having sex with someone and not disclosing your HIV status, you need to be aware that in doing so you may be breaking the law and could face severe penalties, including possible prison time. In many countries including the United States, the UK and 13 countries in West and Central Africa, not disclosing your HIV status to someone you have sex with is a criminal offense. You are legally required to disclose your status to sexual partners. The charges and penalties vary from country to country and state/providence, but non-disclosure ranges from various classes of misdemeanors to different degrees of felonies, including attempted murder, some carrying prison sentences. You may even be charged with manslaughter or murder if you pass the virus onto someone and they die.

To protect yourself, you may consider making a statement, with your partner present, in front of a third party that clearly acknowledges that they are fully aware of your status. It will always come down to one persons word against another so it is helpful to have a third party involved. Most likely you will never actually need to prove that you told someone of your status but just in case, it is good to cover all of the bases.

For U.S. state by state laws:

http://www.aclu.org/files/images/asset_upload_file292_35655.pdf

Originally published on PanAware on Wordpress.com on January 21, 2014. By Jeannie Wraight.

However, many in the HIV professional field as well as HIV activists and advocates were reluctant to discuss the issue of a decrease in risk of transmission based on available research.

In the two years that followed HPTN 045 it’s become apparent that it is not as simple as an undetectable viral load equates to being non-infectious while a detectable viral load equals being infectious. Research subsequent to HPTN 045 has taught us several things: whereas an undetectable viral load DOES decrease the risk of transmitting HIV to negligible (near non-existent) levels, other factors then increase the risk back upward. We know that sexually transmitted diseases increase the risk but it is not clear by how much. We also know that anal sex increases the level of risk in comparison to vaginal sex. The risk of transmission is also greater when the positive person is the insertive partner.

Another important factor when weighing risk is that an undetectable viral load is a snap shot of how much virus was in the blood at the time the test was taken. Since this number can fluctuate, the amount may have increased or decreased since that time. It can be different from month to month, week to week, day to day and even hour to hour. So a person may have been undetectable at the time of their last test but may not be shortly after. Viral load measurements are taken from the blood (peripheral). Research has determined that peripheral viral load may differ from HIV viral load found in semen, vaginal or anal fluids. Thus, your viral load may be undetectable in your blood but may be higher in other body fluids that can effect transmission.

In summary, additional factors can play a role in the level of transmission in the presence of an undetectable viral load.

• Sexually transmitted diseases

• Fluctuations in viral load from time of testing to sexual exposure

• Differences in peripheral viral load from viral load in semen, vaginal or anal fluids

• Type of sex – anal versus vaginal

• Role or position as in being the insertive partner or the receptive partner.

Originally published on PanAware on Wordpress.com on January 21, 2014. By Jeannie Wraight.

For me, the positive partner, it’s rare that my HIV status is an issue in our life together, although it has come up a few times.

As for my husband, he has been amazing and from the beginning, has had few concerns with me being positive. In fact, his reaction to me telling him I had HIV made me fall in love with him immediately. (This is my favorite part of the “how we met” story). The first night we met, after it became obvious that something was on my mind and after several inquiries on his behalf as to what was wrong, I told him that there was something that I had to tell him. He said “Okay” as I saw him almost physically brace himself for what I was about to say. I blurted out “I’m HIV positive,” He let out a big sigh as if he was holding his breath and with a look of relief he said “Is that it? I thought you were going to tell me that you didn’t like me and you’re leaving.” I mean really, how could I not love this man?

Over the course of our almost 3 year relationship and year and a half marriage, I can think of only two issues that have evolved from our HIV sero-discordant relationship. In the beginning, I was concerned about how his family would react to me being positive. We discussed it and decided, mostly upon my urging, to wait for a while to tell them. Being British, and with England having such a low rate of HIV, I assumed they probably didn’t know much about HIV. It was likely, with only 120,000 cases in the UK, that they had never known anyone who was HIV positive, at least not to their knowledge. I wanted my future mother and father-in-law to get to know me first before I told them. I thought that if they knew my status first that HIV would be all they saw when they looked at me. I’d be their son’s fiancée with HIV and not their son’s fiancée Jeannie, and American writer who loves animals, has a good sense of humor and is crazy about their son. Unfortunately, it didn’t work out that way. Someone else told them before I could get a chance to know them very well. They weren’t upset that I was HIV positive but they were upset that we didn’t tell them. Although it probably marred our relationship early on, I still feel it was the right decision. It took me several months to get past the anger I felt towards the person who we believed told them. The last year Martyn was in England, waiting for his U.S. Visa to be issued, we’d stay at his parents’ house when I’d come to visit. This was the justification given for this person needing to tell his parents that I had HIV. As if they were in some kind of danger from being around me and needed to be protected by having the knowledge that I was HIV positive. It’s one of the few times that I ever really felt stigmatized. I felt as if I were being looked at as a lesser woman, diseased, judged and as if I was trying to hide my status because I was ashamed of it. I’ve never been ashamed that I was HIV positive. If I don’t disclose to someone it’s either because I have a reason not to or it’s just none of their business.

The only other issue I have with him being negative is the fear that I might transmit HIV to him. This comes up mainly when he gets tested even though I know that the likelihood is extremely small due to my very low viral load. I try to keep it in perspective but when he gets tested for HIV, it’s hard not to think about it and the possibility scares the hell out of me. What if? What if he tests HIV positive? Of course my first concern is for him, his health and helping him deal with it but after that, even if he’s okay with it, how would I live with that guilt? My rational mind tells me the same things he tells me. That it is both of our decisions. He wants to be with me and that comes with some level of risk. He agreed to and accepts that risk and so do I. My head knows these things but my heart wonders if I could ever forgive myself. As I’m sure it is for many positive halves of a positive/negative couple, there is always that fear in the back of my mind. That guilt that it’s never 100% safe, however, I plan to spend the rest of my life with this person. We will deal with anything and everything that comes up throughout the course of our life together. If a little bit of stigma and fear is what we have to face to be together, then so be it.

Every HIV positive and HIV negative person has to decide if even the most minute risk of transmission is worth it for them. We made our decision and live with it. Sure there are the now-and-then worries I spoke of, but in the end, the worry is a small price to pay for having such a wonderful person in my life. And for him, I guess being with me outweighs the risk of HIV infection. For us, if me being HIV positive is the worst thing that we have to deal with in our marriage, then we know we’re in for a very happy and fulfilling life together.

Originally published on PanAware on Wordpress.com on January 21, 2014. By Jeannie Wraight.

When Paige Rawl starts her senior year at Indianapolis’s Herron High School next month, she’ll be cheer captain and a member of the student government and prom committee. This summer, the 17-year-old held down a part-time job at Hollister, hawking the popular Southern California-inspired clothing brand.

The all-American girl — who happens to be HIV positive.

Paige was infected unknowingly at birth by her mother, who wasn’t aware of her own HIV status. Paige’s mother got the virus from Paige’s father, who she says passed away in 2001 due to an AIDS-related illness.

Between 100 and 200 American children are born HIV positive each year, according to the U.S. Centers for Disease Control and Prevention. More than 35,000 people under age 24 live with HIV/AIDS in the United States today.

In addition to teens like Rawl who were born with HIV, a significant and worrisome population of kids have been infected through sex. Starting with middle-schoolers at age 13, teenagers and young adults account for almost 40 percent of all new annual HIV infections in the United States. Every hour, two young people between age 13 to 24 are infected, according to the White House Office of National AIDS Policy.

Born With HIV: A Rough Beginning

Rawl was so unaware of HIV/AIDS as a child that “I’d heard the word HIV at doctor’s appointments, and I started wondering why I was taking medication,” she says. And then at school, “We started talking about girls and guys, and HIV was brought up a couple of times.”

Her curiosity grew, and when was in fifth grade she asked her mom if she was HIV positive or negative. Rawl’s mother told her the truth and assured her that as long she kept taking her medicine, she’d be fine. “I wasn’t really old enough to completely understand at the time,” Paige says.

Her mother never told her she should be ashamed or secretive, so in sixth grade Rawl says she confided to her best friend at the time.

“I still didn’t really understand what HIV was yet,” she recalls. “To me it was like telling her that I had asthma. I didn’t see the big deal.

“That ended up kind of blowing up in my face.”

Within two weeks, the entire school knew, Rawl says. People called her “PAIDS.” Some students threatened to beat her up.

“That’s when I started realizing that not everyone’s going to be completely fine with me being positive.” Rawl says none of her middle school peers received more than a verbal warning for their bullying and threats.

Students weren’t the only perpetrators of ignorance and HIV stigma. Early in Rawl’s eighth grade year, she says a soccer coach asked her during a game while they sat on the bench, ” ‘By the way, I’ve heard that you have AIDS. Is that true?’ ”

Rawl told her no. “She didn’t ask me if I was positive. She asked me if I had AIDS, and I didn’t. I felt like I didn’t really owe her an explanation.”

Rawl’s mother confronted the coach, who Rawl says responded this way: “ ‘We can use her HIV status to our advantage because players from the other team will be afraid to touch her and she can score a goal.’ ” Completely aghast, Rawl, her mom, and her doctor met with the school administration to halt the abuse. Instead, Rawl says the principal told her, “I wish you could go here but I can’t promise to protect you.” Rawl was home-schooled the rest of eighth grade.

A New Start in High School

At Herron High School, the public charter school she entered in ninth grade, Paige says the administration has been extremely supportive. Her sophomore year, she spoke before the entire school, disclosing her HIV status and sharing her story. “The principal ended up going up and saying, ‘If Paige has any problems because of her HIV status you will no longer be a student here,’ ” she recalls.

However, she still has occasional unfortunate reminders that prejudice against HIV/AIDS is alive and well. Outside of a McDonald’s, the older sister of her supposed best friend from sixth grade “drove by and ended up throwing a drink at me,” Rawl says. In a recent incident at a frozen yogurt shop, Rawl saw a couple of girls from the township where she used to attend middle school. “I heard them say my name and something about AIDS,” she says. “I didn’t even know these girls. I don’t understand why, four years later, they’re still talking about it. I don’t go to school there. I don’t go to the football games there. Why am I still a topic of discussion?”

She is not deterred. Since she was 14 she’s been an HIV/AIDS peer educator and speaks regularly on the topic. Last year she joined the Indianapolis Urban League’s “I Need You to Listen, Hear and Understand Me” tour, an entertaining and interactive youth empowerment event that visits schools, churches, and other community groups promoting healthy sexual choices and personal responsibility. “Whoever comes to me, and if the timing’s right, I’ll gladly speak,” she says.

But Rawl is also aware that no matter how you pitch the message about the importance of safe sex it can be a tough sell to teens.

“They kind of just brush it off their shoulders,” she says. “They’re like, ‘She might be our age, but she was born with it.’ ”

Pregnancy Trumps HIV as a Teen Fear

Even among her friends and schoolmates, she says, pregnancy, not HIV, is the main concern. Friends tell her, “Well, I’m not gay and I’m not black,” to which she responds, “Well, I’m not gay and I’m not black.” When they retort, “Yeah, but you were born with it,” she tells them, “But there are other people out there that have it and they might not even know, or might not tell you. There could be someone who looks like me who was born with it who’s out there not telling you guys. And you can’t always trust what someone says.’

“People are always saying, ‘He didn’t tell me,’ or ‘She didn’t tell me.’ And it’s like, well, you have to protect yourself. It’s not only about protecting the other person. You have to protect yourself as well.”

The risky attitude Rawl sees among her peers is verified by the CDC. The National Youth Risk Behavior Survey from 1991 to 2011 found that the percent of high school students who used condoms “at most recent sexual intercourse” has been stuck at 60 percent since 2003.

From her position on the front line, Rawl says a frank discussion about sex is necessary.

“At my school and other schools they offer pregnancy tests, but they don’t offer condoms,” she says. Often, when she speaks at a school, administrators will ask her not to talk about sex or how to use a condom. “I understand that you might not want me to get up there and talk about sex, but I get asked questions,” she says. “They’re teenagers — it’s going to come up.”

In addition, she says, too many parents either refuse to see the problem of youth HIV/AIDS, or just aren’t aware of it. “They don’t realize that [HIV] is out there, and that it’s better to give kids condoms and have them be safe than not,” she says.

Dating With HIV

Rawl has run up against these issues personally in her own dating life, and has found that a little bit of education goes a long way. She says the guys she’s dated tend to already know her HIV status, because they’re friends before starting to date. “I’ve never really had a problem with a guy,” she says.

A guy’s parents, however, are another story.

“I think at first they’re just shocked to hear that their son’s dating someone that’s HIV positive,” she notes. “At this age, it’s not something that parents hear every day.” Still, in her experience, “Once [parents] get that little bit of education behind it, they’re fine.” Looking Ahead As her senior year approaches, Paige Rawl is enjoying the last days of summer, and socking away some money from her job. A year from now she plans to attend college and begin pre-pharmaceutical studies with an eye toward one day becoming an HIV/AIDS researcher.

But that’s next year. Before she gets there, she has a cheerleading squad to captain, a prom to help plan, and a lot more speaking and educating to do.

Originally published on PanAware on Wordpress.com on January 21, 2014. By Jeannie Wraight.

Reducing The Risk To The HIV Negative Partner – If you and your partner are considering conceiving a child there are several options to minimize the risk of infection to the negative partner. The first step is to inform your doctor that you are considering pregnancy and discuss the ways in which the risk of transmitting HIV can be reduced.

Your doctor can discuss your options thoroughly with you and your partner so you can make the choice that is safest and best for you.

Treatment As Prevention – We now know that if an HIV positive person is taking HIV antiretrovirals the risk of transmitting HIV to their uninfected partner can be reduced by as much as 96%. Some couples chose to conceive a child based on this projected reduction in risk.

PrEP – Another option for protecting the negative partner during conception is a short course of post-exposure prophylaxes (PrEP) during the time period while attempting to conceive. PrEP is when a person who is at high risk of contracting HIV is prescribed Truvada, an HIV antiretroviral medication in order to reduce the risk of infection.

Sperm Washing – In cases where the male partner is HIV positive and the female isn’t (or if both are positive and wish to avoid the risk of reinfection) sperm washing can be used. During the sperm washing process the seminal fluid is separated from the semen on the belief that most of the HIV genetic material is in the seminal fluid. The sperm is then inserted directly into the females womb during ovulation. Fertility drugs may be needed if pregnancy is not achieved through the insemination process alone. Sperm washing can cost as much as $1300-2000.

Reducing the risk to baby – Without intervention, 15 – 45% of babies born to HIV positive mothers would become HIV infected. The rate of mother to child transmission of HIV is decreased to under 2% when HIV antiretrovirals are given to both mother and child during pregnancy and delivery.

Originally published on PanAware on Wordpress.com on January 21, 2014. By Jeannie Wraight.