‘I don’t feel like I’m a threat anymore.’ New HIV guidelines are changing lives.

by Lenny Bernstein

Last year, Chris Kimmenez and his wife asked their doctors a simple question. Could Chris, who has been HIV positive since 1989 but keeps the virus in check through medication, transmit it sexually to Paula?

They were pretty sure they knew the answer. Married for more than 30 years, they had not always practiced safe sex, but Paula showed no signs of having the virus.

Their physicians were less certain. "They had a conversation, and they did some research on it," Kimmenez said. "They came back to us and said there may still be a risk, but we're comfortable enough" that unprotected sex is safe.

"We knew that all along," said Kimmenez, 56, who works with ex-offenders in Philadelphia.

Simple acknowledgments like that one, spoken quietly in the privacy of doctors' offices, mark the arrival of a historic moment in the history of HIV: Medical authorities are publicly agreeing that people with undetectable viral loads cannot transmit the virus that causes AIDS.

The policy change has profound implications for the way people view HIV. The change promises not just unprotected sex for couples like Kimmenez and his wife, but also reduced stigma for the 1.2 million Americans living with HIV. The policy change also offers the hope that more people will be tested and begin treatment if they are found to have the virus rather than live in denial.

"There was something in me that said I'm damaged and I made a mistake, and people see it and I'm a danger," said Mark S. King, 56, a writer and activist who tested positive for HIV in 1985. But now, treatment has fully suppressed the virus. "When I finally internalized this message . . . something suddenly lifted off of me that is hard to describe. It was almost as if someone wiped me clean. I no longer feel like this diseased pariah."

Once considered a death sentence, HIV infection can now be managed via medication, much like chronic diseases such as diabetes, and people with the virus live full lives. The rate of new infections in the United States dropped by 10 percent from 2010 to 37,600 in 2014, according to the U.S. Centers for Disease Control and Prevention. Fewer than 7,000 people died of HIV/AIDSthat year.

In July, Anthony S. Fauci, head of the National Institute of Allergy and Infectious Diseases and one of the world's leading authorities on HIV, publicly agreed at an international conference that people with undetectable viral loads in their blood cannot transmit the virus.

On Sept. 27, the CDC followed, releasing a letter that said people who take medication daily "and achieve and maintain an undetectable viral load have effectively no risk of sexually transmitting the virus to an HIV-negative partner."

The influential British medical journal the Lancet HIV endorsed the idea in an editorial this month. All told, more than 500 organizations in 67 countries now agree, according to Bruce Richman, who is leading the "Undetectable = Untransmittable" (U=U) campaign credited with beginning to change public perception of HIV transmissibility.

A recent breakthrough in HIV research shows patients who are taking their medicine, and have no detectable signs of HIV, cannot transfer the virus to others. (Joyce Koh/The Washington Post)

Like many developments in the four-decade history of HIV, this one has been slow to gain acceptance among mainstream health-care providers. Many are not aware of it or must unlearn the habit of drilling safe-sex lessons into patients, as they have been doing almost since the AIDS epidemic began. HIV-positive people also must alter deeply ingrained beliefs that nothing good can come of revealing their status.

The change in philosophy also has sparked concerns, for which there is some evidence, that more condomless sex will lead to an increase in other sexually transmitted infections. And experts acknowledge that a few people whose viral load is not truly suppressed will eventually transmit HIV to others.

Laws in many states also are out of date. Many still criminalize the failure to reveal HIV status to a sex partner, even when there is no danger of transmissibility.

But on balance, authorities said, the agreement that people with HIV can prevent sexual transmission by taking a single pill each day is nothing less than revolutionary.

"Nothing is completely risk-free," Fauci said in an interview. "What the community feels is that all of the good that will come from the lack of social stigmatization" is worth the risk. "This means a lot to them. This has a lot to do with their self-worth, their identity."

An undetectable viral load is defined as fewer than 200 copies of the virus in a milliliter of blood. Generally, people with HIV should maintain that level or a lower level for six months before beginning to consider themselves incapable of transmitting the virus sexually.

Many who faithfully take antiretroviral medication and lead healthy lifestyles can bring their viral loads considerably lower, to 50 or even 25 copies.

But progress raises other questions, said Jonathan Mermin, director of the CDC's National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. What if a person forgets to take medication for one day? What about two, or more? How long after resuming therapy should someone wait before once again considering himself or herself incapable of transmitting the virus? And what about people who go above and below the 200-copy threshold over time? Studies show that to be the case for about 10 percent of the people with HIV, Mermin said.

As yet, there are no evidence-based answers to these questions, he said. "The public-health challenge now is moving from theory to implementation," he said. "Many questions arise following the information that when a person with HIV has an undetectable viral load, he has effectively no risk of transmitting the virus."

In 2008, Swiss experts announced that those with undetectable levels of HIV could not transmit HIV through sex. But the world was not ready to hear the message then.

Starting in 2011, three large studies confirmed the idea, tracking more than 75,000 vaginal and anal condomless sex acts without finding a single HIV transmission to an HIV-negative partner from someone whose viral load was undetectable. The initial 2011 study was named "breakthrough of the year" by Science magazine.

Now the challenge is to get the message out to HIV-positive people, caregivers and the public. And that process has been slow.

"I would tell everyone about this, friends and family and people I wanted to date, and I was coming across so much resistance, because major institutions were saying this is wrong," Richman said.

He launched U=U last year, initially a lonely and sometimes controversial campaign to let the world know something that many people with HIV had concluded for themselves. His breakthrough moment came in August 2016 when New York City's health department signed on. Soon, other cities and organizations were joining.

Still, the message is moving mainly from people with HIV to health authorities and policymakers, rather than in the other direction, Richman said.

"This is a radical challenge to the status quo and to 35 years of HIV and fear of people living with HIV," Richman said.

Brigitte Charbonneau, 71, of Ottawa, found out this year that she could not transmit the virus after 23 years of being HIV positive. "I thought, 'My God, I've been living with my man for 20 years, and we've been using condoms,' " the retired hairdresser recalled. "And I phoned him right that afternoon."

Jennifer Vaughan of Watsonville, Calif., vividly remembers the moment she learned she could not transmit the virus to her boyfriend. The mother of three tested positive in February 2016 after she became critically ill with what was finally determined to be AIDS. HIV was not among the possibilities she or her doctors considered, until a blood test revealed the virus. She thinks she was infected by a previous boyfriend with a history of intravenous drug use.

Vaughan attended a speech Richman gave and was talking with him in a parking lot outside a Starbucks.

"I'll never forget him saying those words, 'You can't transmit the virus if you're undetectable,' " the 47-year-old substitute teacher recalled. "And I said, 'Wait, what?'

"It was like the sky opened. Are you kidding? There's, like, zero risk? I don't feel like I'm a threat anymore. I don't feel like I'm dirty. I don't feel like I'm a dangerous person."

Courtesy:  The Washington Post

He Took a Drug to Prevent AIDS. Then He Couldn’t Get Disability Insurance

By Donald G. McNeil Jr.

Feb. 12, 2018

[Update: State financial regulators in New York said that they would investigate reports that gay men have been denied insurance policies covering life, disability or long-term care because they were taking PrEP.]

Three years ago, Dr. Philip J. Cheng, a urology resident at Harvard’s Brigham and Women’s Hospital, nicked himself while preparing an H.I.V.-positive patient for surgery.

Following hospital protocol, he took a one-month course of Truvada, a cocktail of two anti-H.I.V. drugs, to prevent infection. Later, because he was an unattached gay man, he decided to keep taking Truvada to protect himself from getting H.I.V. through sex.

The practice — called PrEP, short for pre-exposure prophylaxis — is safe and highly effective. Several studies have shown that users who take the drug daily are at nearly zero risk of H.I.V. infection.

But when Dr. Cheng applied for disability insurance — which many young doctors do to protect a lifetime’s worth of income should they be hurt — he was told that, because he was taking Truvada, he could have only a five-year policy.

Dr. Cheng is healthy, has never had surgery or been hospitalized, and takes no other medication. “And I never engaged in sexually irresponsible behavior,” he said. “I’ve always been in longer-term monogamous relationships.”

“I was really shocked,” he added. “PrEP is the responsible thing to do. It’s the closest thing we have to an H.I.V. vaccine.”

Unable to get the company to change its decision — even after he offered to sign a waiver voiding his policy should he become H.I.V.-infected — he did what some other gay men in similar situations have been forced to do. He stopped taking Truvada.

He then applied to a different insurer — and was offered a lifetime disability policy.

There are nearly 800 life insurers in this country, according to the American Council of Life Insurers. There are no national figures on how many of them have denied coverage to men because they take PrEP.

But insurance brokers, gay-rights advocates and staff at medical clinics said in interviews they had heard of numerous such cases. H.I.V. specialists say the denials endanger men’s lives by encouraging them to drop PrEP if they need life, disability or long-term-care insurance.

By contrast, health insurance companies usually cover PrEP, which the Centers for Disease Control and Prevention endorsed in 2014 for anyone at substantial risk of H.I.V., which includes any gay or bisexual man who might have sex without a condom with anyone of unknown H.I.V. status.

The denials turn the insurance industry’s risk-management standard on its head: men who do not protect themselves can get policies, while men who do cannot.

“It doesn’t make any sense,” said Dr. Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases, and perhaps the nation’s best-known AIDS doctor. “It ought to be the other way around.”

Dr. Robert M. Grant, the AIDS researcher at the University of California, San Francisco, who led the clinical trial that established the value of PrEP, said such denials “really are silly — it’s like refusing to insure someone because they use seatbelts.”

Moreover, advocates argue, the practice singles out gay men for discriminatory treatment. Women, for instance, are not denied coverage if they use birth control pills or get the vaccine against human papillomavirus, which can cause cervical cancer. Yet like Truvada, use of these drugs suggests an active sex life, with the accompanying risks.

And insurers routinely cover applicants with actual diseases controlled by medications, including diabetes, epilepsy, high blood pressure and bipolar disorder.

Bennett Klein, a lawyer for GLAD (GLBTQ Legal Advocates and Defenders), based in Boston, said he knew of 14 instances in which companies denied life insurance, long-term-care insurance or disability insurance to gay men on PrEP, or told brokers they would do so if asked.

Courtney Mulhern-Pearson, policy director for The San Francisco AIDS Foundation, said denial of life insurance to men on PrEP was “an increasing trend.”

When companies did offer explanations, they said applicants were turned down because the company believed they must be engaging in high-risk sexual behavior.

When she explained to some insurers that PrEP was protective, regardless of behavior, “there seemed to be an understanding,” she said. “But so far I haven’t seen any policy changes.”

Dr. Cheng’s stethoscope at home. He said his insurer claimed not to know about Truvada’s side effects, even though it was approved in 2004.CreditKayana Szymczak for The New York Times

The foundation considers the practice discriminatory, and Ms. Mulhern-Pearson has requested a meeting with California’s state insurance department “to see if there’s anything we can do legislatively or through regulation.”

The Times contacted the A.C.L.I., the industry’s trade association, and four of the companies named by Mr. Klein, sending each detailed questions about underwriting policies related to Truvada and the sexual habits of applicants, and what other medical conditions caused them to deny coverage.

An A.C.L.I. spokesman said the council did not collect such information from members.

For competitive reasons, companies do not publicize their underwriting standards and often do not explain why they deny an individual policy. Each policy is denied — or offered at a higher price or shorter term — based on many medical factors, including weight, blood pressure, cholesterol, smoking status and so on.

Mutual of Omaha, which Mr. Klein is suing for denying long-term-care insurance to an unnamed gay man, declined to answer any questions and said it did not comment on pending litigation.

In motions filed in GLAD’s suit, Mutual of Omaha conceded that it had denied an applicant coverage because he took Truvada.

The drug is indicated only for persons with H.I.V. or at high risk of acquiring H.I.V., the company said. Therefore it turned down everyone taking Truvada.

“The fact that the drug is less than 100 percent effective adds yet another layer to the risk profile,” the company added.

According to internal underwriting guidelines obtained by Mr. Klein, Mutual of Omaha sells long-term-care policies to people with Addison’s disease, bipolar disorder, depression, mild coronary artery disease, diabetes, epilepsy and high blood pressure, as long as they are controlled by medication for various periods, from six months up to three years.

It also insures former alcoholics who were alcohol-free and in support groups, as well as people who had recovered from heart valve surgery or cancers of the bladder, breast, prostate and skin.

“The irrationality is enough to make your mind spin,” Mr. Klein said.

Other insurers replied to The Times’s questions with brief answers saying they did not deny coverage solely for taking PrEP but declining to describe what conditions or behaviors would cause them to exclude coverage.

A spokesman for Lincoln National Life, in Fort Wayne, Ind., said it had approved policies for men on PrEP and had offered some lower rates reserved for low-risk clients. A spokesman was unsure when the company began doing so.

A spokeswoman for Principal National Life in Des Moines said the company “doesn’t decline individuals just because they’re taking Truvada” and did not quiz applicants about their sexual history. She declined to answer further questions.

A spokeswoman for Protective Life Insurance of Birmingham, Ala., said it “did not deny coverage based solely on Truvada use,” and might even offer a low-risk rate to someone taking the drug. She, too, declined to answer further questions.

Mr. Klein said he had sometimes heard similar answers from insurers even as men are denied coverage.

“I am fairly certain that this is just slippery language, and that they are excluding applicants when they see a diagnosis of ‘high risk sexual behavior’ or ‘exposure to H.I.V.’ in an applicant’s medical record.”

Those descriptions are linked to diagnostic codes that doctors use for reimbursement from health insurers when a patient asks for a prescription for Truvada. “That’s no different from excluding based on PrEP usage alone,” Mr. Klein argued.

Aaron E. Baldwin, a financial planner in San Francisco who specializes in clients living with H.I.V., said he had been seeing such denials for three years.

Some clients denied coverage, he said, were young executives with large student debts who wanted insurance so that should anything happen to them, their parents would not be saddled with payments.

In his experience, Mr. Baldwin said, companies in Midwestern and Southern states were reluctant to insure men taking Truvada, while Prudential, for example, insured even men with H.I.V. as long as they could show they took their medications every day.

In his case, Dr. Cheng said, a broker told him that the insurer claimed to be unsure about Truvada’s side effects. But the drug was approved by the Food and Drug Administration in 2004, and a study published in 2016 concluded that it was safer for long-term use than aspirin, which can cause gastrointestinal bleeding.

Dr. Cheng is now in a long-term relationship with an H.I.V.-negative man, and so he no longer takes Truvada. But the sting of his insurance denial lingers.

“It was blatant discrimination,” he said.

Correction: February 12, 2018

An earlier version of this article misstated the name of a company that provides insurance to men with H.I.V. It was Prudential, not New York Life.


Courtesy:  The New York Times

Mathilde Krim, Mobilizing Force in an AIDS Crusade, Dies at 91

Mathilde Krim, who crusaded against the scourge of AIDS with appeals to conscience that raised funds and international awareness of a disease that has killed more than 39 million people worldwide, died on Monday at her home in Kings Point, N.Y. She was 91.

Her death was confirmed by Bennah Serfaty, a spokeswoman for amfAR, the Foundation for AIDS Research, of which Dr. Krim was the founding chairwoman.

When the nation learned in the early 1980s that the virus that causes AIDS had begun its terrifying attack upon the human immune system, Dr. Krim, a geneticist and virologist with wide experience in cancer research and a passion for causes, plunged into a fight not only against the virus but also for the civil rights of people who had it.

Over the next several decades, she became America’s foremost warrior in the battle against superstitions, fears and prejudices that have stigmatized many people with AIDS, subjecting them to rejection and discrimination. There is still no cure for acquired immune deficiency syndrome, which has become pandemic, although antiretroviral medication can slow the disease and may lead to near-normal life expectancy with prompt diagnosis and treatment.

In 2016, there were more than 36.7 million people, worldwide, infected with the human immunodeficiency virus, or H.I.V., which causes AIDS. That was 300,000 fewer than in 2015, but the cases nevertheless resulted in one million deaths, down from a peak of 1.9 million in 2005.

The virus that causes AIDS is spread by many vectors: through sex, needle-sharing among drug users and accidental needle sticks among medical personnel, as well as through blood transfusions and from mother to infant during pregnancy or breast feeding.

In Africa, where the disease originated and where it is most widespread, most transmission is through heterosexual sex.

In the early days of the American epidemic, AIDS killed large numbers of hemophiliacs, infected by tainted blood-clotting factors, and Haitians, because the virus had apparently reached the Americas there first.

But the American public focused on two other high-risk groups, gay men and drug addicts, people long shunned by family-oriented Americans and the mostly heterosexual establishment.

“They felt that this was a disease that resulted from a sleazy lifestyle, drugs or kinky sex — that certain people had learned their lesson and it served them right,” Dr. Krim told The New York Times Magazine in 1988. “That was the attitude, even on the part of respectable foundations that are supposed to be concerned about human welfare.”

In his book “The Gay Metropolis: The Landmark History of Gay Life in America” (1997), Charles Kaiser wrote: “One scientist outside the government was more important than any other heterosexual in New York City in sounding the alarm about the growing crisis. Her name was Mathilde Krim.”

Dr. Krim in 1992 with Dr. Mervyn F. Silverman, then the president of amfAR, the AIDS research organization of which she was the founding chairwoman. Credit Don Hogan Charles/The New York Times

Money for research and literature to educate the public were needed, and Dr. Krim had access to both. Her husband was the entertainment lawyer Arthur B. Krim, a former chairman of United Artists and Orion Pictures and of the Democratic National Finance Committee. He was a confidant of many national leaders, including Presidents John F. Kennedy, Lyndon B. Johnson and Jimmy Carter.

Dr. Krim mobilized a galaxy of friends from the worlds of politics, the arts, entertainment, society and Wall Street. She organized art sales, auctions, fashion shows and other fund-raisers, held benefit parties at her Manhattan townhouse, gave television interviews, lobbied government officials and testified before Congress.

And she dazzled them with her scientific knowledge, grounded in her doctoral studies at the University of Geneva, and her dignified appeals to conscience, in many languages. The daughter of parents of Swiss, Italian and Austrian heritage and a convert to Judaism who had joined the Zionist underground, Dr. Krim spoke Italian, German, French and Hebrew as well as English.

In 1983, she and others created the AIDS Medical Foundation to raise money and support AIDS research. It often acted faster than federal agencies, which could take a year to process grants. In 1985, her group and another in Los Angeles merged to form the American Foundation for AIDS Research, or amfAR. Elizabeth Taylor was its founding international chairwoman, and Barbra Streisand, Woody Allen and Warren Beatty lent their names.

The foundation became the nation’s pre-eminent private supporter of AIDS research, prevention, treatment and advocacy. In 2005, when Dr. Krim stepped down as founding chairwoman, it was renamed the Foundation for AIDS Research, or amfAR, reflecting its international scope. The foundation has raised and invested an estimated $517 million for thousands of programs.

Using the foundation as her platform, Dr. Krim promoted needle-exchange programs and the use of condoms and other safe-sex practices; castigated religious leaders who denounced homosexuality as immoral; fought mandatory AIDS testing that might be used to persecute gay people; opposed the use of placebos in experimental drug trials, saying patients might be dead before outcomes were proved; and campaigned for laws to bar discrimination against gay people in housing and employment.

Her effectiveness derived partly from her credentials. Besides earning her doctorate in biology, she had served on White House commissions and conducted research at the Weizmann Institute of Science in Israel and at the Cornell Medical College and Sloan Kettering Cancer Center in New York.

But it also arose from a moral perspective that could supersede science. She argued, for example, that heterosexuals and homosexuals were all one big risk group. American epidemiologists did not concur at the time, because so many victims were gay, but she was partly right: Although gay sex now accounts for most transmission in the United States, about 24 percent is through heterosexual sex, and women bear the brunt of that, often through sex with partners who conceal the fact that they are bisexual or injecting drugs.

Dr. Krim sometimes waded into deep political waters. In 1990, Mayor David N. Dinkins of New York asked her advice on naming a city health commissioner. She recommended Indiana’s commissioner, Dr. Woodrow A. Myers Jr.

But gay groups objected when they learned that Indiana, by law, recorded the names of people with AIDS and could even quarantine those who knowingly had unprotected sex. Although recording the names of carriers and tracing their contacts is standard practice in fighting venereal diseases, and though quarantine has been used to control outbreaks of, for example, drug-resistant tuberculosis, the advocates felt such measures would be stigmatizing.

Dr. Krim and others on a search committee first stepped back for a reassessment, then re-endorsed Dr. Myers, then withdrew the endorsement. Dr. Myers was appointed anyway, and Dr. Krim found herself at odds with longtime allies. But her admirers tempered their ire with respect.

Dr. Krim, left, with Elizabeth Taylor, amfAR’s founding international chairwoman, and Dr. Silverman in Oviedo, Spain, in 1992. Credit Denis Doyle/Associated Press

“I think she’s exceptionally naïve politically,” said the playwright Larry Kramer, a prominent advocate for people with AIDS. “We are all very angry with her, so far as one can ever get angry with Mathilde, because we love her so.”

She was born Mathilde Galland in Como, Italy, on July 9, 1926, to Eugene Galland, a Swiss-Italian, and the former Elizabeth Krause, an Austrian. Her father was an agronomist. The family moved to Geneva when Mathilde was 6.

At the University of Geneva, Mathilde was a brilliant student of biology and genetics. Appalled by newsreels of Nazi concentration camps in 1945, she sought out Jewish activists, joined the Zionist underground Irgun and spent a summer smuggling guns over the French border for resistance fighters against British rule in Palestine.

After earning a bachelor’s degree in 1948, she married an Irgun comrade, David Danon, a Bulgarian medical student, and converted to Judaism. The couple had a daughter, Daphna, in 1951, and in 1953, after Mathilde received her doctorate, they emigrated to Israel, where the marriage ended in divorce.

In 1954, she joined the research team of the German-born Israeli molecular biologist Leo Sachs at the Weizmann Institute of Science in Rehovot. She studied cancer-causing viruses and helped write a dozen papers, including one by Dr. Sachs that laid groundwork for the prenatal diagnostic technique of amniocentesis, detecting gender and possible defects in a fetus.

She married Mr. Krim, a Weizmann trustee, in 1958 and moved to New York the next year, exchanging pioneer life in a perpetual war zone for the Upper East Side and an illustrious social milieu.

Restless for challenges, Dr. Krim resumed research — at Cornell Medical College from 1959 to 1962 and at Sloan Kettering from 1962 to 1985. She thought she glimpsed a cure for cancer in interferons — proteins released by body cells to fight pathogens — but it was not the cure-all she had envisioned. She was later an adjunct professor at Columbia University.

Dr. Krim is survived by her daughter, Daphna Krim; two grandchildren; and a sister, Maria Jonzier. Arthur Krim died in 1994.

Dr. Krim’s many awards included the Presidential Medal of Freedom, the nation’s highest civilian honor. Awarded by President Bill Clinton in 2000, it recognized her “extraordinary compassion and commitment.”

In his book “The Gay Metropolis,” Mr. Kaiser wrote that Dr. Krim had been disturbed by the initial indifference to the AIDS crisis in the 1980s in part because it carried echoes of her past.

“The reaction of many of her heterosexual friends,” he wrote, “reminded her of the stories she had heard about Jews during the war, before she knew any herself, that they were dirty and evil and deserved to die.

“Dr. Krim was determined to prevent America from using AIDS to stigmatize homosexuals,” he continued, “and with the help of many of her famous Hollywood friends, she would be magnificently successful.”


Courtesy: The New York Times

World AIDS Day 2017 Open House

Please join us for an open house to commemorate people whose lives have been affected by HIV/AIDS. We will be screening "Etched from Granite: Digital Stories of HIV in New Hampshire."

Friday, December 1 from 2-4 pm                                                                                                                                            2 Blacksmith Street in Lebanon (just behind Steve's Pet Shoppe)                                                                                    Snacks will be served!                                                                                                                                                        For more information, call (603) 448-8887



Losing a Father and Husband to AIDS, and Finding Him Again

My second child was born two days after Father’s Day in 1990. Three weeks later, my husband collapsed, disoriented and feverish, in a restaurant. Soon, he was lying in a hospital bed with full-blown AIDS.

It’s hard for people who weren’t around then to imagine what AIDS used to look like. It was an epidemic that turned young men old; murdered beauty and promise. You knew someone at work who wouldn’t feel well, you wouldn’t see him for a few days, you would never see him again.

AIDS made men ghosts.

Before he got sick, John was an attentive lover to me, a doting dad to our 2-year-old, a gracious son-in-law to my aging parents and a successful journalist. He was home for dinner every night like clockwork. He was someone it was hard to believe could get AIDS.

In the months before our son was born, John had been experiencing a string of nagging illnesses, including intestinal distress and a persistent cough. The many doctors he consulted, because he was “straight,” married and overworked, did not even consider AIDS. They diagnosed stress.

After John’s AIDS diagnosis, I was rushed in for my own test. It remains the scariest thing I’ve ever done. Back then, it could mean a death sentence.

I asked him how he happened to contract a disease largely transmitted through gay sex. He told me he’d slept with men, which, at the time, surprised me. It was the beginning of a world falling apart.

My AIDS test came back negative: The kids and I had been spared. But nine months later, John died, leaving me asking, “What just happened?”

He left me crying out for him in the night. He left me with many painfully unresolved feelings and unanswered questions. John also left me with two small children, and I was determined to raise them free from the stigma of AIDS.

I resolved that I had to keep how he died a secret. No one could know. We never talked about him. I stashed away all his pictures. When the kids were old enough, I shared the truth with them, and emphasized why they couldn’t talk about it — or their father.

I then determined to give us a picture perfect life, in a suburban Connecticut house with a white picket fence, and a really nice man, a former altar boy and Eagle Scout, no less, filling John’s Italian loafers. I worked in children’s publishing and brought home cute books. We had a rescue dog!

Life was good, and I was proud of how I’d restored us.

What I wasn’t proud of, though, was continuing to keep John a secret. I wanted my kids to know about their father, who had once been a great guy — before AIDS. I wanted to Photoshop John into our family picture, undiseased.

For a while I found a way to do this by taking them to New Hampshire every summer, to visit John’s grave in a sunny corner of a maple-shaded family plot. It was hushed, peaceful and green. They’d stand at shy attention at his footstone, their sneakered feet pressed tightly together, their chubby hands offering up tired-looking daisies. Sometimes they’d sing camp songs, and leave behind dream catchers.

Beneath the dignity of his tombstone, desexed, sanitized and dead, John could be a father my kids could really respect. He could even be a husband I could like again.

But by the time they hit middle school, my kids didn’t want to go to New Hampshire anymore. They didn’t seem to want to do anything connected to their late father.

They left for college at about the same time I lost both my job and my elderly parents. My relationship with my boyfriend also flattened; we’d been wonderful caretakers together, now what? I began to feel compelled to thaw those unresolved feelings I’d put on ice in 1990.

No more Photoshop. No more family tableaux. No more sanitizing cemeteries. Just me, John and AIDS.

I read his love letters. I looked at pictures from when we were young, beautiful and smitten. I began to practice saying, “My husband died of AIDS.” I began to write.

And I began to stop caring if my kids ever felt anything at all for their late father they barely knew. I realized you can’t manufacture such things.

Then, in 2009, my daughter graduated from John’s alma mater, Brown University, where the alumni participate in the processional. After the ceremony was over, my daughter surprised me by asking, “Mom, didn’t you think today was sad? I looked at the Class of ’76 and thought, where’s Dad? Why isn’t he here?”

Three years later, after receiving his diploma from Claremont McKenna College, my son said, his eyes glistening, “Mom, you know who I thought about during the whole ceremony? My father.”

Relieving John of his ghostly status after he died of AIDS has been a long and, at times, painful process. Some family members and friends have viewed my talking and writing about John truthfully as a form of “outing.” “Why now, after so long?” they ask. Can’t I just get over it? Mostly heterosexual and married, virtually none had walked in my — or his — shoes. They failed to grasp the weight of John’s closeted lifestyle, and how crippling it was, first for him, and then for me, to keep it closeted.

They failed to grasp how powerful and indelible was the stain of his disease.

This reaction, for me, has been painful, causing me many nights of fitful sleep. Was I doing the right thing, telling John’s truth — now mine?

I now know that telling our story honestly was the right thing to do. To relieve John of ghostly status has been liberating. For so long I’d thought I was just among a handful of women who’d lost their husband to AIDS; but during AIDS Walks, I have marched alongside thousands of women who have lost a husband to this “gay man’s disease.” We have stories we can finally tell.

Recently my kids and I went to a revival of the musical “Falsettos,” which deals with familiar issues: a gay husband and father, a man lost to AIDS, a wife calling into the night.

My children and I went to dinner and talked afterward, about their father, and about how hard it’s been, for so long, to not talk about him, to deny his existence. In telling our story honestly, we have brought John back in three-dimensional, human terms. He happened, we happened, it happened.

On Father’s Day 2017, John is no longer a ghost.

Maggie Kneip is the author of the memoir “Now Everyone Will Know: The Perfect Husband, His Shattering Secret, My Rediscovered Life.”

Wine Tasting Event to Benefit the HIV/HCV Resource Center

Wine tasting event to benefit the HIV/HCV Resource Center

Wednesday, May 17 from 5-7 at the Norwich Inn


Dan and Whits and the Norwich Inn team up together to offer monthly wine tastings that support local non-profits. We will receive a percentage of the proceeds from both ticket and wine sales from the the May 17 wine tasting.


The Norwich Inn will offer cheese platters, and several local vendors will also bring food to sample. There will be five or six reds and whites to try.  Advance tickets ($15) are available at the HIV/HCV Resource Center. Please contact Ryan (Ryan@H2RC/ 603 448 8887) for more details. We hope to see you there!


One in 10 children has 'Aids defence'




By James Gallagher Health and science reporter, BBC News website

A tenth of children have a "monkey-like" immune system that stops them developing Aids, a study suggests.

The study, in Science Translational Medicine, found the children's immune systems were "keeping calm", which prevented them being wiped out.

An untreated HIV infection will kill 60% of children within two and a half years, but the equivalent infection in monkeys is not fatal.

The findings could lead to new immune-based therapies for HIV infection.

The virus eventually wipes out the immune system, leaving the body vulnerable to other infections, what is known as acquired human immunodeficiency syndrome (Aids).

The researchers analysed the blood of 170 children from South Africa who had HIV, had never had antiretroviral therapy and yet had not developed Aids.

Tests showed they had tens of thousands of human immunodeficiency viruses in every millilitre of their blood.

This would normally send their immune system into overdrive, trying to fight the infection, or simply make them seriously ill, but neither had happened.

Keep calm and carry on

Prof Philip Goulder, one of the researchers from the University of Oxford, told the BBC: "Essentially, their immune system is ignoring the virus as far as possible.

"Waging war against the virus is in most cases the wrong thing to do."

Counter-intuitively, not attacking the virus seems to save the immune system.

HIV kills white blood cells - the warriors of the immune system.

And when the body's defences go into overdrive, even more of them can be killed by chronic levels of inflammation.

Prof Goulder said: "One of the things that comes out of this study is that HIV disease is not so much to do with HIV, but with the immune response to it."

For scientists, the way the 10% of children cope with the virus has striking similarities to the way more than 40 non-human primate species cope with simian immunodeficiency virus or SIV.

They have had hundreds of thousands of years to evolve ways to tackle the infection.

"Natural selection has worked in these cases, and the mechanism is very similar to the one in these kids that don't progress," Prof Goulder said.

War or peace?

This defence against Aids is almost unique to children.

Adult humans' immune systems tend to go all-out to finish off the virus in a campaign that nearly always ends in failure.

Children have a relatively tolerant immune system, which becomes more aggressive in adulthood - chickenpox, for example, is far more severe in adults due to the way the immune system reacts.

But this does mean that as the protected children age and their immune system matures, there is a risk of them developing Aids.

Some do, some remain Aids-free.

Dr Ann Chahroudi and Dr Guido Silvestri, from Emory University in the US, said the study may have found the "very earliest signs of coevolution of HIV in humans".

In a commentary, they added: "It is not known whether it would be clinically safe for these newly identified HIV infected paediatric non-progressors to remain off-therapy.

"This assessment is further complicated by the fact that prevention of HIV transmission to sexual partners becomes relevant in adolescence."

People with HIV can have normal life-expectancy if they have access to antiretroviral drugs.

But their super-heated immune system never returns to normal, and they face greater risks of cardiovascular disease, cancer and dementia.

Prof Goulder believes these findings in children could ultimately help rebalance the immune system in all HIV patients.

He told the BBC: "We may be identifying an entirely new pathway by studying kids that in the longer term could be translated to new treatments for all HIV infected people."

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Prince Harry Gets Tested for HIV

Prince Harry Gets Tested for HIV

Prince Harry's recent posting of his HIV test live on Facebook lead to an upsurge of testing in England. 

Let's keep up the momentum here; if we all get tested, we will all know our status.                                                         Call for an appointment today! (603) 448-8887


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The World Could End AIDS if It Tried

NY Times Editorial; June 13, 2016

The world has made so much progress in reducing the spread of AIDS and treating people with H.I.V. that the epidemic has receded from the public spotlight. Yet by any measure the disease remains a major threat — 1.1 million people  from AIDS-related causes, and 2.1 million people were infected with the virus. And while deaths are down over the last five years, the number of new infections has essentially reached a plateau.

The United Nations announced a goal last week of ending the spread of the disease by 2030. That’s a laudable and ambitious goal, reachable only if individual nations vigorously campaign to treat everyone who has the virus and to limit new infections.

The medicines and know-how are there, but in many countries the money and political will are not. Besides shining a spotlight on the disease, it’s crucial that wealthy nations like the United States continue to pony up generously to underwrite what must be a global effort. Donors and low- and middle-income countries need to increase spending to $26 billion a year by 2020, the United Nations says, up from nearly $19.2 billion in 2014.

While still high, deaths attributable to AIDS are down 36 percent from 2010. That is largely because many more people are receiving antiretroviral drugs — 17 million people in 2015, compared with 7.5 million five years earlier. These medicines allow people to live near-normal lives and greatly reduce the risk of transmission to others.

But while some countries like South Africa (once a disaster zone) and Kenya have made tremendous progress in increasing treatment, many people who need the lifesaving therapy do not have access to it. Only 28 percent of those infected in Western and Central Africa were being treated in 2015, according to a recent United Nations report. The numbers were even lower in the Middle East and North Africa (17 percent) and Eastern Europe and Central Asia (21 percent). In some countries, people who test positive are told to come back when they get sick because of budget constraints, says Sharonann Lynch, an H.I.V. policy adviser at Doctors Without Borders. Many never return.

In other places, it can be hard to even reach people who need drugs because of war or the lack of a functional public health system. And many who need help are unwilling to come forward because they fear being ostracized or worse because they are gay, use drugs or are engaged in sex work. Discriminatory laws and attitudes in countries like Nigeria, Russia and Uganda have probably forced tens of thousands of people who need help into hiding.

In some countries, infections have actually increased, which helps explain why progress has plateaued over all. In Eastern Europe and Central Asia, for instance, 190,000 people became infected last year, up from 120,000 in 2010. And while the number of deaths is way down, the number of new infections was flat or down modestly over the same five-year period. This was also true of the United States, where an estimated 44,073 people were diagnosed in 2014, the most recent year for which the Centers for Disease Control and Prevention have published data, down from 44,940 in 2010.

These numbers do not argue for complacency, but instead for more vigorous public health campaigns, increased access to condoms, clean needles for drug users and prescriptions for pre-exposure drugs. There is still no cure for AIDS. But there are many ways to minimize its deadly consequences.


"Out and Safe" at the Main Street Museum

Please join us Tuesday, April 12th @ 6:30 pm for “Out&Safe”, a workshop all about keeping safe in conflicts of all kinds. In this forum centered around presentations by Grace Alden and Hilary Mullins, we will be discussing approaches to deescalation and non-defensive communication, as part of TRANSpossibilities, the Main Street Museum’s ongoing educational, outreach, and advocacy series.



Syringe Exchange NHPR Interview

HIV/HCV Resource Center Executive Director Laura Byrne, NH Rep. Joe Hannon, Greenland Police Chief Tara Laurent and others discuss Syringe Exchange on NHPR's "The Exchange." 


March 22,2016                                      9:00am-10:00am