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A new e-book, Positively Negative: Love, Pregnancy, and Science’s Surprising Victory over HIV, takes us into the lives of two couples who lived this history.
The couples Boerner features each spent about a decade agonizing over whether to have a child. In the early 2000s, both couples received counseling on alternatives to traditional conception: adoption, artificial insemination with donor sperm, or in vitro fertilization with sperm-washing. During the years these couples agonized, a few clinician-researchers started to experiment with protocols to allow HIV-discordant couples to conceive the old-fashioned way. Swiss clinician-researcher Pietro Vernazza, an HIV specialist, surveyed the state of knowledge in 2003, and decided that it was time to start cautiously offering his patients a new protocol.
In the end, both couples conceived healthy children using Vernazza’s protocol, with the cooperation of empathetic physicians who were willing to let them make their own choices and take their own chances. In 2011, the long-term, multinational study of HAART demonstrated that it was very effective in preventing transmission.
In an epilogue, Boerner describes a conversation with a much younger woman who has had a baby with her HIV-positive husband. Boerner wants to tell a story of “love” and “victory,” and on the face of it, this story certainly seems to have a happy ending. Nursing Clio is a collaborative blog project that ties historical scholarship to present-day political, social, and cultural issues surrounding gender and medicine.
Except where otherwise noted, all content is licensed by the credited writer under a Creative Commons BY-NC-SA License. Journalist Heather Boerner persuasively argues that social reality needs to catch up with medical advances: people with HIV are now living long, productive lives with a manageable chronic illness. It had been tough enough to know, going into their marriages, that they were never absolutely safe from HIV transmission, though they used condoms conscientiously. Both couples felt strongly about having a child who would be genetically related to both mother and father. First, he would coordinate with the couple to be sure the HIV-partner’s infection was well-controlled with HAART, and that neither partner had an STI that could increase the chance of transmission. One testified before the California legislature and successfully helped engineer an exception on the ban of HIV-positive men’s sperm donations for HIV-discordant couples, only to discover that California fertility clinics still refused to perform sperm washing. But even with the support of these physicians, the years and years of struggle, and intimations that they were irresponsible for wanting to conceive, took a toll. In 2012 the CDC acknowledged the beneficial use of HIV drugs as prophylaxis, and in 2014 issued detailed guidance for PrEP protocols. Her perspective seems so different from the featured couples’: she sees HIV as just another health condition to be managed.
In response to final paragraph, I wonder to what extent reproductive choices are ever just individual ones given public health concerns, health and medical costs, and effects on those around us, not to mention the social construction of our wants and desires. Side note, if anybody at Nursing Clio has a minute, can you send along info re: where to find the coffin image? They should be able to take advantage of the promises of recent medical breakthroughs in order to marry who they love and bear children. Sperm washing combined with IVF would make this possible, but it was tremendously expensive. These studies had shown that highly active antiretroviral treatment (HAART), available since 1995, could reduce detectable viral load to almost zero, and researchers hoped that the drug regimen would dramatically reduce transmission as well.
They would monitor the woman’s fertility, and she would take HIV medication as pre-exposure prophylaxis (PrEP) shortly before ovulation. In 2008, when he issued a formal statement about his protocol, many researchers considered him irresponsible, perhaps even reckless.
The other learned of Vernazza’s research from an American HIV researcher, only to be rebuffed by her physician, who refused to prescribe the HIV drugs off-label so that she could use them as PrEP.
To me, though, the real lesson here is that public health and medical establishments move slowly, and people’s whole lives can be spent struggling in the gap between innovation and implementation.
We sought answers for years, always with safety at the forefront and our rearview mirrors fixed firmly on the past.
We are advocating that a complete (and evolving) menu of options be presented to couples, so that they can make informed decisions about family planning. We carried it proudly all the way back to one of their houses and proceeded to patch the hole with a piece of plywood and tar.
But the condoms served both a practical and a ritual purpose: they really did reduce the chances of transmission, and at the same time, they provided emotional reassurance.
In California, where one couple lived, it was illegal, an unfortunate side-effect of a 1989 law banning sperm donation from HIV-positive men. Researchers had also been investigating the possibility of using the drugs prophylactically, in HIV-negative people with HIV-positive partners. The wives spoke of how tired, and angry, it made them that it took a decade of angst to feel empowered to go ahead and do what they could have just done at the beginning. Younger people haven’t pictured a scenario in which one unfortunate sexual encounter could lead to an agonizing death a few months later. As a society, when it came to HIV and childbearing, we did not let couples make their own decisions and take their own risks. But the results of a long-term, multinational study of HAART’s ability to prevent transmission was not yet complete. We made it impossible for couples to decide that a small risk of HIV transmission was worth the possibility of building a family together. And many public health advocates were nervous that Vernazza’s announcement would be taken as license to skip condoms all the time, among the many HIV patients who are not willing or able to take their medications conscientiously, because of mental health complications or drug addiction. In the end, there was joy at having a child, and relief at not being infected, but also bitterness. And we left those couples dangling for almost two decades, too long for many of them to ever bear children. The CDC maintained its position that those who were HIV positive should use condoms all the time, no matter what. Prevention is much better that treatment, and treatment often fails those who cannot adhere to a daily regimen. In the future, will we do better in recognizing fertility and reproductive decision-making as a critical element of reproductive justice? One of the boys found a canoe paddle in the weeds and we three got into the boat and started to paddle out. But treatment is also excellent, and HIV-positive people and their partners can be supported to have healthy families and good relationships. Might we find a way to accommodate individuals’ thoughtful decisions about risk-taking, rather than making their decisions for them? They need to be responsible, but they do not need to be burdened by the fear and trauma of the past generation’s experience of the infection before it was treatable. We feverishly paddled with that one oar and bailed out the water with our hands and an old can.
Barely we made it to shore and got out just before the boat sank below the water and headed downstream. Wet, cold and shaking the three of us headed home knowing we would never tell our parents of this stupid adventure.
We were lucky to be alive and it was only by Goda€™s grace that I can live to tell about it. Sometimes that other road will bring you back to your original path and sometimes it will take you farther away from it.
But God used him to gather and lead his people out of Pharaoha€™s slavery and split the Red Sea in two.A Joseph was sold into slavery by his brothers and was cast into prison but became the second most powerful person inEgypt. Or, maybe just maybe a smile or a kind word from you to a stranger may just prevent them from going home and ending their own life and their grandson will some day save the world. He will bring to light things that are now hidden in darkness, and will make known the secret purposes of people's hearts. Throw your troubled waters out of your boat and paddle on down that river of life with Him at your side.
You have ears, but you don't really listen.Psalm 13:2 -- How long must I worry and feel sad in my heart all day? I have been praying for something to happen for 4A? years now and what I prayed for was not granted.
Leta€™s speak of reality a€“ He is God and He can do what He wants to or not do what He doesna€™t want to. We cannot command the Lord to do anything whether we do it in pleading, tears, anger, or desperation.
If God has the will, He may answer our prayers about life but nothing says that He absolutely has to. All we have is the hope that he will hear us, see what we are going through, and grant us a little drop of His mercy in this life. He will cure a cancer, heal the deaf, grow an arm back or bring someone back to life but that does not mean He will do it all the time. He has given us guidance through His word (the Bible) and occasionally gives us a nudge or lesson to learn from but basically kicks us out of the nest like the mother bird does to face the challenges of life.
I get so frustrated at times that my prayers are not answered and I have to keep reminding myself that this is my life and I need to deal with it on my own sometimes.
Their job is to preach the message to inspire, encourage, and give hope to their congregations. If we are to be an example of His mercy to others, it can only be done with people of lesser stature than us.
He wants us to spread the Gospel and not make up stories of what He has done for us personally in life.
Just show others how you believe in His salvation and forgiveness and tell them of His Word. He has promised everything in His kingdom of Heaven to those who accept His Son as Lord and Savior. Life here is just a temporary setback, trial and test to see if we are worthy of everlasting life sharing in His love -- or without it in a very dark place. So accept His Son as your Lord and claim the only real promise that He made to us --- Forgiveness and Salvation.
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