Nel's New Day

December 1, 2016

The Plague Returns

It has been exactly 25 years since the identified beginning of the AIDS epidemic in the United States. Initially it was called GRID (Gay-Related Immune Deficiency), but the name morphed into Acquired Immune Deficiency Syndrome, the last stage of Human Immunodeficiency Virus Infection (HIV). Originally thought to be non-existent until 1981, research now shows that its development may have come for the harsh colonial practices in French Equatorial Africa of forced labor, unsafe injections and vaccinations with unsterilized needles, and the use of “bushmeat” for food during the beginning of the 20th century.

A false sense of morality kept conservatives from stopping the onslaught of the disease during Ronald Reagan’s reign because they thought that AIDS was limited to gay men despite the fact that half those infected were non-gay. As president, Ronald Reagan didn’t even use the term “AIDS” in public for almost five years in spite of the thousands of people dying from the disease, and he failed to give a speech on the epidemic for another two years. Federal laws even kept people with AIDS from being permitted to fly on commercial airplanes.

In the past 25 years, 650,000 people in the United States died of AIDS and hundreds of thousands more were stigmatized. More people might have died if AIDS activists had not taken to the streets to force research on drugs, awareness policies, and help from the government. A new book from David France, How to Survive a Plague, chronicles the pain, frustration, anger, and work from activists over the 15 years in which the government fought them from saving lives following his Oscar-nominated documentary film four years ago.

Andrew Sullivan writes in The New York Times:  

“Here again are the manifestations of terror: the purple cancerous lesions of Kaposi’s sarcoma, fatal when they migrated to your lungs; toxoplasmosis — a brain disease that turned 20-somethings into end-stage Alzheimer’s patients; pneumocystis carinii, which flooded your lungs until you drowned; cytomegalovirus, which led to blindness, so that young men in AIDS wards were ‘hugging walls and scraping the air to find their nurses’; molluscum contagiosum, covering the body in ‘small, barnacle-like papules’ that oozed pus; peripheral neuropathy, with which a mere brush of a sheet against your skin felt like an electric shock; and cryptosporidiosis, a parasite that took over people’s gastrointestinal tract, slowly starving them to death. It’s been over a decade since those Latin nouns were household words in gay life, and reading them still traumatizes.”

The brave activists fought for help, and the fight extended survival time from 18 months to 22 months after a long nine years. Deaths geometrically increased as drugs failed and researchers refused to try new ones. Yet the gay men stayed at the center of organizing drug trials and meeting with pharmaceutical executives after they made their point by taking over their offices.

Author France not only writes brilliantly but also exhaustively researches his subject. As a journalist, he was a part of the fight during these 15 years, first at the biweekly New York LGBT newspaper Native and later undercover at the New York Post where he was soon fired after the editor “found out you’re gay.”

Cynthia Carr writes:

“France’s book focuses on the science: the work of early caregiver-researchers like Dr. Joseph Sonnabend and his activist-patient Michael Callen; the search by AIDS patients for illegal—or even homemade—cures; the dithering at agencies like the National Institute of Allergy and Infectious Diseases (NIAID) that were supposedly studying treatments. Ultimately, center stage goes to the small group of activists who created the Treatment Action Group (TAG), an offshoot of ACT UP, and who managed to work their way inside the pharmaceutical industry. By 1996, fifteen years after the first reports of a “gay cancer,” antiretroviral drugs called protease inhibitors were allowing many patients to manage an HIV/AIDS infection. What becomes clear in How to Survive a Plague, above all, is that it needn’t have taken so long—to put it mildly.

plague“Unknown to any doctor or patient, at that point, scientists had already discovered the retrovirus that causes AIDS. Yes, early in 1983, at the Institut Pasteur in Paris. I’ve always found this to be one of the most shocking stories to emerge from the plague years, and France is not the first to tell it: how American scientist Dr. Robert Gallo tried to take the credit for this discovery after French scientist Dr. Luc Montagnier sent him samples of what would later be called HIV. Long story short, this delayed both meaningful research and the release of an antibody test.

“Then, when that first antibody test did become available, in 1985, most gay men refused to take it for fear that they would lose their jobs, their housing, and their health insurance. Most cities, including New York, had no gay-rights legislation in place. In fact, gay sex was still illegal in many states. That year, twenty state legislatures debated quarantining people with AIDS, while Republican congressman William Dannemeyer introduced a raft of homophobic legislation, including a bill that would give a long prison term to any gay person who tried to donate blood. There was simply no upside to taking the test. There were no treatments.”

“Say No to Drugs” was the mantra of the 1980s thanks to Nancy Reagan, and just owning syringes was illegal in many states.  Other countries controlled the AIDS epidemic. The German government provided funding to gay community NGOs and invited them to develop their own prevention projects. Britain publicized the problem through a campaign of “AIDS: Don’t Die of Ignorance.” Western countries created needle-exchange programs, distributed free syringes, and developed opiate-substitution treatment. Germany had needle-vending machines, and England and Wales distributed 25 million free syringes each year by 1997. In the United States, however, where 40,000 people develop HIV annually, the ban on federal funding for needle exchanges remained until 2009 and then was replaced in 2011 after the Tea Party swept over Congress.

With the new Trump/Pence administration, HIV and AIDS cases could soar. People would lose their medications through the disappearance of the “pre-existing condition” of the Affordable Care Act (ACA). Southern states have had the highest rates of new HIV diagnoses but refused federal Medicaid funding which could provide HIV meds.

When Mike Pence became governor of Indiana, the state experienced its worst HIV outbreak in its history, worsened by Pence’s decision to maintain the state ban on needle exchanges and slash funding for HIV testing facilities. This is the same governor who just gave away $7 million of public taxes to keep 1,000 jobs at Carrier in the state. Pence also tried to defund Planned Parenthood, a key HIV test source. Blamed for the HIV outbreak, Pence prayed about the problem.

Pence campaigned for Congress in 2000 by promising he would take funding away from HIV/AIDS drug research to put into organizations that would prevent LGBT behavior. He wrote, “Resources should be directed toward those institutions which provide assistance to those seeking to change their sexual behavior.” His policy is to “cure the gay” and ignore HIV.

If Tom Price is confirmed for health secretary, he would control federal programs responsible for conducting HIV/AIDS research, education, treatment, and prevention. The Department of Health and Human Services oversees the National HIV/AIDS Strategy, which is tasked with developing policy to combat HIV nationally. Price is a member of the Association of American Physicians and Surgeons that questions whether HIV causes AIDS. He also wants to erase the ACA, slash Medicaid funding, and privatize Medicare.

When Ebola became a threat in the United States with a very few cases, President Obama took action and stopped it. The first observed case of AIDS in the United States was followed by 15 years of ignoring the issue or joking about it. The new administration, backed up by an ultra-conservative Congress, will most likely cause HIV diagnoses and AIDS deaths to soar.

Today is the 29th annual World Aids Day, always on December 1, dedicated to raising awareness of the disease caused by HIV. You can commemorate the day by reading How to Survive a Plague, because the election of Trump and Pence pretty much guarantees that the epidemic will return.

March 27, 2015

Indiana Legalizes Discrimination

For most of my life, Indiana was just the state between Illinois and Ohio, fairly innocuous when compared to the corrupt one on the left with four of the last seven governors going to prison and the occasional scandals in the one on the right. Indiana’s one president, Benjamin Harrison, barely made a splash, and most people don’t know that Vice-president Dan Quayle, is a native. Current governor, Mike Pence, is a possible GOP presidential candidate. He’ll just have to decide whether to make another gubernatorial run because he can’t run for both offices. Little noticed when he accepted a form of expanded Medicaid last January, his latest law has put him on the map like New Jersey’s Chris Christie and Texas’ Rick Perry.

Yesterday he signed state Senate Bill 101, the Religious Freedom Restoration Act (RFRA) into law. Religious belief can now be used for legalized discrimination in Indiana starting on July 1:

“A governmental entity may not substantially burden a person’s exercise of religion, even if the burden results from a rule of general applicability…. A person whose exercise of religion has been substantially burdened, or is likely to be substantially burdened, by a violation of this chapter may assert the violation or impending violation as a claim or defense in a judicial or administrative proceeding.”

“Person” is defined as an individual, organization, religious society, church, corporation, company, “unincorporated association or another entity,” but the law fails to define “substantial burden.” Individuals can find legal protection in the bill “regardless of whether the state or any other governmental entity is a party to the proceeding.” The exception enables discrimination because people cannot file complaints against businesses for discrimination.

Although other states have proposed the same law, even Jan Brewer was smart enough to not sign a similar bill when she was governor in Arizona. The signing was a private ceremony with only invited fundamentalist Christians and Jews, news of the event crossed the country like a wildfire.

Businesses and organizations that complained about the discrimination, but Pence told them that their concerns were only a “misunderstanding.” When signing the bill, he said, “This bill is not about discrimination, and if I thought it legalized discrimination I would have vetoed it.” He blamed the media for the national outrage and said his primary concern was for religious believers who feel their liberty is endangered.

Major businesses, activists, and organizations speaking out against the bill included the Indianapolis Chamber of Commerce and Indiana’s Republican mayor Greg Ballard. The chief executive of the Indiana Chamber of Commerce, Kevin Brinegar, assailed the law as “entirely unnecessary.”

CEO Marc Benioff of Salesforce, purchaser of Indianopolis-based Exact Tartet, was joined by other cloud computer companies in protest. Benioff tweeted, “Today we are canceling all programs that require our customers/employees to travel to Indiana to face discrimination.”

NCAA President Mark Emmert said the Indianapolis-based group would examine “how it might affect future events as well as our workforce.” The Final Four men’s basketball tournament is in Indianapolis next week. Arn Tellem, a prominent sports agent whose clients include the basketball players Russell Westbrook, Anthony Davis and Jason Collins, wrote:

“The measure codifies hatred under the smoke screen of freedom and jeopardizes all that has been recently accomplished. It legalizes discrimination against L.G.B.T. individuals and will cause significant harm to many people.”

Tellem urged the Indiana Pacers and the entire NCAA “to not only condemn this blatantly unconstitutional legislation, but to take forceful action against it by re-evaluating their short- and long-term plans in the state.”

Indianopolis’ largest convention, Gen Con, has threatened to take its 56,000 attendees and $50 million in revenue elsewhere when its contract with the Indiana Convention Center expires in 2020.

Todd Adams, associate general minister and vice-president of the Indianapolis-based Christian Church (Disciples of Christ) said, “Our perspective is that hate and bigotry wrapped in religious freedom is still hate and bigotry.” With 659,000 members in North America, the denomination has been headquartered in Indianapolis for almost 100 years. The group may look for another location for its 2017 convention that draws about 6,000 attendees.

CEO Jeremy Stoppelman of Yelp, which publishes online reviews of businesses, wrote a blog opposing laws that legalize discrimination. “It is unconscionable to imagine that Yelp would create, maintain, or expand a significant business presence in any state that encouraged discrimination by businesses against our employees, or consumers at large.”

Eli Lilly, employer of over 11,700 people in the state, wrote, “Simply put, we believe discriminatory legislation is bad for Indiana and for business.” It added, “As we recruit, we are searching for top talent all over the world. We need people who will help find cures for such devastating diseases as cancer and Alzheimer’s. Many of those individuals won’t want to come to a state with laws that discriminate.”

George Takei, actor in Star Trek, promised a boycott. “If it goes into effect, Indiana will be marked as a state where certain people are not welcome,” he posted on Facebook. “We will not spend. And we will not attend events, including GenCon, the world’s largest gaming convention, held in Indianapolis each year. Many fans here are gamers, Governor Pence, and we will demand the convention move out of your state.”

Broadway actress Audra McDonald threatened to drop an upcoming Indiana performance but decided instead to donate proceeds to LGBT rights groups. She tweeted, “On the phone w/@united so long I forgot what year it was, then saw the law Indiana Gov.Pence just signed & remembered…It’s 1950.”

San Francisco is the first city to take action since the bill was signed into law. Mayor Ed Lee announced that the city will not use taxpayer money to fund any city employees’ trips to Indiana.

The law’s target is the LGBT community after the state was forced to legalize marriage equality across the nation. Eric Miller, executive director of the group Advance America, said the law protects Christian bakers, florists and photographers who don’t want “to participate in a homosexual marriage,” Christian businesses that refuse “to allow a man to use the women’s restroom,” and churches that refuse to allow their premises to be used for same-sex weddings.

Yet the discrimination can be against anyone. An employer can refuse to hire Jewish employees, a landlord can refuse to rent to Muslims, or a business can refuse to serve atheists. Pharmacists can refuse to fill prescriptions for birth control or drugs dealing with HIV. Restaurants can refuse to serve African-Americans, and people can be exempted from compliance with the Americans with Disabilities Act.  Anyone violating a biblical passage is at risk for discrimination.

Indiana has problems more serious than a same-sex couple wanting to buy a wedding cake. With 79 newly confirmed HIV cases within the past three months in Scott County, Pence declared an epidemic and lifted the state law preventing needle exchange in the county. The number is up from an annual average of five cases, and all the new cases are linked to needle sharing among drug users. Pence said, “despite my reservations,” that he is permitting drug users to exchange used hypodermic needles for sterile ones and only in that county for 30 days. Doctors disagree with Pence that this will fix the problem. Poverty has led to an outbreak of hepatitis, a precursor to HIV epidemics, and the county has no addition treatment center. They expect the problem to grow worse across the state.

 

Complaints of over-pricing have forced Coventry Health Care to lower the cost of HIV and AIDS drugs of more than $1,000 per month to $5 to $100 per month for most treatments starting in June. The AIDS Foundation of Chicago had warned Coventry that its high prices might violate federal protections against discrimination. In February, the federal Centers for Medicare and Medicaid Services issued a rule for 2016 that prohibits plan designs that place “most or all drugs that treat a specific condition on the highest cost tiers” and that charge more for single-tablet regimens than for treatments that require patients to take multiple pills.

 

Mike Pence plans to call the businesses and organizations that think his new law is discrimination. He may have difficulty persuading them, but he could use the approach that a Democratic state representative in Oklahoma developed. Emily Virgin proposed that businesses who wish to discriminate “shall post notice of such refusal in a manner clearly visible to the public in all places of business, including websites.” The amendment adds that the notice “may refer to the person’s religious beliefs, but shall state specifically which couples the business does not serve by referring to a refusal based upon sexual orientation, gender identity or race.” People should know whether businesses plan to discriminate.

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