Rochester AIDS History Chapter 17

Shoulders To Stand On                                                                           EC August Issue 2016

This month Shoulders to Stand On will look at the impact of AIDS on students in American schools beginning with perhaps the most well known and publicized story of one such individual student, Ryan White.  This author does not recall any student in Rochester, NY who was HIV positive being denied the right to attend school.  If that is not the case this author would appreciate hearing from you at  Overwhelming fear and a lack of knowledge are the birth place for many actions which prove in time to be unfounded and unnecessary.

On June 30, 1985, the Western School Corporation, a public school district which serves Russiaville, Alto, New London, West Middleton, and southwestern Kokomo in Howard County, Indiana, Superintendent James O. Smith banned Ryan White from re-admittance to school.  Ryan, a hemophiliac patient, had been diagnosed with HIV in December, 1984 due to a blood transfusion received earlier in his illness.  The White family filed a lawsuit seeking to overturn the ban. The Whites initially filed suit in the U.S. District Court in Indianapolis. The court, however, declined to hear the case until administrative appeals had been resolved.  On November 25, an Indiana Department of Education officer ruled that the school must follow the Indiana Board of Health guidelines and that White must be allowed to attend school.

The Indiana state health commissioner, Dr. Woodrow Myers, who had extensive experience treating AIDS patients in San Francisco, and the Centers for Disease Control both notified the board that White posed no risk to other students, but the school board and many parents ignored their statements.  When White was finally readmitted in April, a group of families withdrew their children and started an alternative school.  Threats of violence and lawsuits persisted.  According to White’s mother, people on the street would often yell, “we know you’re queer” at Ryan.  The editors and publishers of the Kokomo Tribune, which supported White both editorially and financially, were also ridiculed by members of the community and threatened with death for their actions.

White attended Western Middle School for eighth grade for the entire 1986–87 school year, but was deeply unhappy and had few friends. The school required him to eat with disposable utensils, use separate bathrooms, and waived his requirement to enroll in a gym class.[26] Threats continued. When a bullet was fired through the Whites’ living room window (no one was home at the time), the family decided to leave Kokomo.  After finishing the school year, his family moved to Cicero, Indiana, where White enrolled at Hamilton Heights High School, located in Arcadia, Indiana. On August 31, 1987, a “very nervous” White was greeted by school principal Tony Cook, school system superintendent Bob G. Carnal, and a handful of students who had been educated about AIDS and were unafraid to shake White’s hand.

On March 29, 1990, White entered Riley Hospital for Children in Indianapolis with a respiratory infection.  As his condition deteriorated, he was placed on a ventilator and sedated. He was visited by Elton John and the hospital was deluged with calls from well-wishers. Ryan died on April 8, 1990.

In August, 1990, four months after White’s death, Congress enacted The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (often known simply as the Ryan White CARE Act), in his honor. The act is the United States’ largest federally funded program for people living with HIV/AIDS. The Ryan White CARE Act funds programs to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families

Ryan White was one of a handful of highly visible people with AIDS in the 1980s and early 1990s who helped change the public perception of the disease. White, along with actor Rock Hudson, was one of the earliest public faces of AIDS. Along with later public figures who became associated with HIV/AIDS, such as the Ray brothers, Magic Johnson, Arthur Ashe, The Brady Bunch‘s Robert Reed, Tim Richmond, Kimberly Bergalis, Elizabeth Glaser, Liberace and Freddie Mercury, White helped to increase public awareness that HIV/AIDS was a significant epidemic.

In 1992, Ryan’s mother founded the national nonprofit Ryan White Foundation. The foundation worked to increase awareness of HIV/AIDS-related issues, with a focus on hemophiliacs like Ryan White, and on families caring for relatives with the disease.[39] The foundation was active throughout the 1990s, with donations reaching $300,000 a year in 1997. Between 1997 and 2000, however, AIDS donations declined nationwide by 21%, and the Ryan White Foundation saw its donation level drop to $100,000 a year. In 2000, White’s mother closed the foundation, and merged its remaining assets with AIDS Action, a larger charity. She became a spokeswoman for AIDS activism and continues to arrange speaking events through the site devoted to her son,   White’s high school, Hamilton Heights, has had a student-government sponsored annual Aids Walk, with proceeds going to a Ryan White Scholarship Fund.

Ryan White’s death inspired Elton John to create the Elton John AIDS Foundation. White also became the inspiration for a handful of popular songs. Elton John donated proceeds from “The Last Song,” which appears on his album The One, to a Ryan White fund at Riley Hospital. Michael Jackson dedicated the song “Gone Too Soon” from his Dangerous album to White, as did 1980s pop star Tiffany with the song “Here in My Heart” on her New Inside album.  In November 2007, The Children’s Museum of Indianapolis opened an exhibit called “The Power of Children: Making a Difference,” which remains a sobering, featured exhibit and continues to develop, while it features White’s bedroom and belongings alongside similar tributes to Anne Frank and Ruby Bridges.

In a 1993 interview, prominent gay rights and AIDS activist Larry Kramer said, “I think little Ryan White probably did more to change the face of this illness and to move people than anyone. And he continues to be a presence through his mom, Jeanne White. She has an incredibly moving presence as she speaks around the world.”

Shoulders to Stand On is proud to recognize the children like Ryan White who have shown us how to be courageous, open, and steadfast in the face of fear, oppression, anger and death.  Today, perhaps more than ever before, we need to be patient, vigilant, courageous and proud as we continue the struggle for equality and justice in peaceful non-violent action.  Next month we will continue looking at the impact of AIDS on students in America.

Rochester AIDS History Chapter 16

Shoulders To Stand On                                                               EC July Issue 2016

AIDS in Minority Communities (Continued)

The year 1986 was a pivotal year in AIDS history.  Ronald Reagan, President of the United States, makes his first remarks on the AIDS epidemic.  It is three-sentences long.  Rock Hudson becomes the first “movie star” to come out as having AIDS.  This launches the Foundation For AIDS Research founded by DR. Michael Gottlieb, Hudson’s physician and Elizabeth Taylor.  AZT Phase II trials begin testing AZT with 300 patients.  The First Black AIDS Conference is held.  Surgeon General Koop releases his first Report on AIDS.  Needle exchange programs began to emerge.

In 1986 here in Rochester, NY the anonymous testing program was testing 40 people a week with approximately 10% testing positive.  In 1986, when AIDS was just starting to be recognized as a deadly illness transmitted through sex and intravenous drug use, conservative author William F. Buckley Jr. wrote in the New York Times, “Everyone detected with AIDS should be tattooed in the upper forearm, to protect common-needle users, and on the buttocks, to prevent the victimization of other homosexuals.”  The Rochester Area Task Force On AIDS convened working groups on community education, long term care and legislative issues.  In September, 1986 a report entitled, “AIDS Impact on the Minority Community”, was presented to the Task Force resulting in expanded representation on the Task Force.  Also in September the University of Rochester is designated by the NIH as an AIDS Drug Treatment and Research Center.

In an article,  A Year In Review, in the  Dec. ’86 – Jan ’87 Empty Closet written by Joe Pakya, He states that there has been a real change in the number of PWA’s from the heterosexual community, particularly women whose only risk for contracting the disease has been through their sexual partners.  These women are not IV drug users themselves, but are the wives or girlfriends of IV drug users and/or bisexual men. Their inclusion in the number of PWA’s means that now 28% ofthe cases of AIDS that AIDS Rochester was dealing with were heterosexual.  In the April, 1987 issue of JAMA, an article on the Epidemiology of AIDS in Women in the United States reported that that women constituted less that 7% of all AIDS cases as of November 1986.  Analysis of the 1819 cases of AIDS in women reported between 1981 – 1986 showed that the majority of women with AIDS were intravenous drug users.  The second most common risk group were women who had heterosexual contact with a person at risk for AIDS.  The proportion of women in this risk group increased significantly between 1982 and 1986m from 12% to 26%.  By 1987, AIDS was the eighth leading cause of death in women aged 15-44 years.  According to the Morbidity and Mortality Weekly Report of November 30, 1999, stated that in 1988, the death rate from HIV infection was nine times higher for black than for white women. MMWR further stated that these disproportionate rates largely reflect the occurrence of HIV infection among injecting drug users and their sex partners.

The Department of Health and Human Services oversees the implementation of numerous health and welfare-related programs including the NIH (National Institue of Health) and CDC (Center for Disease control) as well as many initiatives focused on women’s and minority health care.  Under the CDC in 1987 several actions were already being undertaken in the area of prevention and control directed specifically toward black or Hispanic populations.

  • Of the 55 AIDS Health Education/Risk Reduction (HE/RR) Programs, 15 (28 percent) have activities aimed at their Hispanic populations and 21 (38 percent) have targeted informational services to the black community.
  • Two of the five HE/RR community demonstration projects (Chicago, IL, and Long Beach, CA) included specific elements concerning minorities
  • The fiscal year 1987 prevention of perinatal AIDS initiative ($1.9 million) was targeted mainly at black and Hispanic populations in New York City, northern New Jersey, and Miami.
  • The school health initiative included $100,000 specifically for one Hispanic and one black national organization to help increase involvement of schools and related agencies in AIDS health education.
  • An additional $7 million was made available for AIDS education and prevention among minorities in fiscal year 1987, with a similar amount expected in fiscal year 1988 plus $3 million more in direct funding to be awarded competitively to minority organizations for the same purpose.

In the November-December 1987 Public Health Report article AIDS in Minority Populations in the United States Donald R. Hopkins, MD, MPH Assistant Surgeon General, Public Health Service, and Deputy Director, Centers for Disease Control (CDC) responded to the question asked from a 1987 perspective WHAT Should Be Done?

First, we must be careful to understand the enemy clearly. As I have tried to indicate, we are

faced with a formidable combination of a deadly virus, IV drug abuse, and sexual promiscuity. We cannot ignore any one of these three factors if we hope to succeed in our battle against AIDS.  Second, we need to use the same interventions being used in the white community, although in different proportions because of variations in the distribution of behavioral risks. Some different channels of communication are also needed. These interventions must be based on science, not sentiment. This challenge calls for reason and resources, not rhetoric or rationalization.  Third, we need to urge people who are, or may be, at risk to be voluntarily tested. The greatest source of new infections are the hundreds of thousands of asymptomatic infected people who do not know they are infected.  Fourth, there is a great need to promote cooperation.  There is more than enough work to go around. We must ask not only what

the Federal Government can do for us, but also what we can do for ourselves and for all those

infected people. Fifth, we should remember that this is an international problem. As bad as our situation is in the United States, some of our kinsmen abroad are even worse off. Our problem will not be solved until their problem is solved.  Sixth, we must also remember that this is not

the only important public health problem in minority communities.  Finally, we must keep our eye on the ball which is to prevent infection with this virus.

It seems that this is not an old list of what to do.  The issue of AIDS still requires the same response.  Regardless of whether or not you are a member of a minority community, live on the east coast, west coast or in Rochester, NY AIDS  HAS NOT, DOES NOT AND WILL NOT DISCRIMINATE!

The history of AIDS in minority communities is far from over.  In our next month’s issue, Shoulders To Stand On will look at the history of this epidemic and the Rochester community’s response going forward from 1986.  Shoulders To Stand on applauds all of the efforts made to improve the health and quality of our lives through the work of a variety of grass roots efforts, city, state and federal programs on behalf of all of our communities.


Rochester AIDS History Chapter 15

Shoulders To Stand On                                                               EC June Issue 2016


AIDS in Minority Communities


This month Shoulders To Stand On will begin looking at AIDS in Minority Communities.  AIDS does not discriminate.  In 1981, when Dr. Michael Gottlieb and his colleagues at the University of California, Los Angeles alerted the Center for Disease Control (CDC) about five cases of a rare Pneumocystis pneumonia in gay men, the CDC published a notice in its Morbidity and Mortality Weekly Report (MMWR) on June 5, 1981. This was the first publication of what would come to be known as AIDS. By the time the report was published, 250,000 Americans are already infected.  The report did not mention the race of the five men. “The first five patients were white,” remembered Gottlieb. “The next two were black. The sixth patient was a Haitian man. The 7th patient was a gay African-American man in Los Angeles”


In 1982, the CDC identified Haitians as one of four (homosexuals, heroin addicts, hemophiliacs and Haitians) high-risk groups for contracting AIDS.  The stigma conferred by the new disease on all these groups — who were flippantly designated by some in the popular press as “the 4H Club” — was immediate and severe, but only in one case did an entire nation suffer the consequences – Haiti. Within a year the tourism industry in Haiti decreased by 80 percent. Goods manufactured in Haiti could not be sold in the U.S.  The stigma was so severe that Haitians in the U.S. couldn’t get work or sell their homes.  Haitians were removed from this category in 1985 because scientists could no longer justify including them on statistical grounds.

In 1983 CDC for the first time began tracking AIDS infections by race; infections found in heterosexual females, and prisoners.  In a January MMWR notice, the CDC describes two cases of AIDS in females – one Black and the other Hispanic – who had no other risk factors except that they had been having sex with infected males.  In a second MMWR in January, the CDC details 16 cases of AIDS found in prisoners in New York and New Jersey. In New York, four of the men are black, four are white and two are Hispanic. In New Jersey, three are black and three are white. While most of the men report they are heterosexual, most have also used IV drugs.

In 1985, the first black AIDS organizations were founded.  In Philadelphia, Blacks Educating Blacks About Sexual Health Issues, or Bebashi, was formed to provide street outreach in  response to HIV/AIDS in the African American community.  In San Francisco, Black and White Men Together, led by activist Reggie Williams forms a task force to confront AIDS in their community.  And in Los Angeles, Rev. Carl Bean and members of his Unity Fellowship Church founded  the Minority AIDS Project (MAP).

In 1986, The National Coalition of Black Lesbians and Gays, with a grant from the U.S. Public Health Services, sponsored the National Conference on AIDS in the Black Community in Washington D.C. in July. The conference attracted more than 400 educators, health care providers and activists, connecting people from across the country to address the specific needs of African Americans with AIDS.  Originally scheduled as a 15-minute lunch meeting during the National Conference on AIDS in the Black Community, Surgeon General C. Everett Koop and representatives of color, including Gil Gerard, Suki Ports and Rev. Carl Bean, talk for more than two and a half hours about addressing AIDS in communities of color. They also discuss Koop’s upcoming report, “Understanding AIDS”,  a shorter version of which was mailed to every single person in the United States in 1988. Aside from tax and census forms, it was the only publication to ever be mailed en masse.


No one of color was invited to participate in the 1986 American Public Health Association’s first session on AIDS in October. At the event, Craig Harris, the National Conference on AIDS in the Black Community Coordinator, who is black, gay and living with AIDS, stormed the stage shouting, “I will be heard!” He took the microphone away from San Francisco health commissioner Dr. Merv Silverman and explained the challenges of AIDS in communities of color.  In response, Harris and other activists, including Paul Kawata, Gil Gerard, Suki Ports and Marie St. Cyr, formed the National Minority AIDS Council in 1987. One of its spokespeople was singer Patti Labelle, who appeared in its “Live Long, Sugar” campaign in 1989 along with four HIV-positive men and women of color.


In 1986, Sandra Mc Donald started Outreach, Inc. in Atlanta to provide AIDS outreach in black neighborhoods. It’s the oldest HIV/AIDS organization in the south, and focuses largely on IV drug users.  It was 1986 that needle exchange programs began to emerge in the United States.  Angered by those who said drug addicts couldn’t change their behavior – and despite state and city laws prohibiting the possession of needles without a prescription – Jon Parker, a former addict, started the first U.S. needle-exchange program in New Haven, Conn., to combat the spread of HIV among injection drug users.  Needles and syringes became illegal in many states in the late ’70s, after laws were passed to restrict the sale of drug paraphernalia. The laws helped force IV drug use underground, often to “shooting galleries” where needles were shared among users.  A ban on using federal funds for needle-exchange programs was enacted in late 1988 and went into effect the following year.  Nonetheless, by 1995, there were at least 60 syringe-exchange programs operating (both legally and illegally) in 46 cities across 20 states. Studies done throughout the ‘90s  demonstrated that needle-exchange programs worked in reducing HIV’s spread among IV drug users, their partners and children, and that they did not encourage increased drug use.


In October, 1986 the Morbidity and Mortality Weekly Report (MMWR) the CDC reported that  the incidence rate for blacks and Hispanics is three times as high as that of whites.   Among the cases diagnosed between June 1981 and August 1986, 25 percent are in the black community, who make up 12 percent of the population at the time, and 14 percent are in the Hispanic community, who make up 6 percent of the population. Among children, the disparity is even higher: 58 percent of cases are in the black community, and 22 percent are in the Hispanic community.  As of November, 1986 women with AIDS constituted approximately 7% of all AIDS cases.


Shoulders to Stand On will continue the history of AIDS in Minority Communities.  Many of these communities were discriminated against even before AIDS.  The AIDS epidemic forced all communities to organize, to articulate their needs and to demand state and federal agencies to respond with  resources, support, care and treatment.  In 1985 the first federal resources dedicated to HIV prevention were made available to all state and local health departments nationwide.


Shoulders To Stand On is proud to acknowledge the contributions, courage, and perseverance of  Reggie Williams, Rev. Carl Bean, Gil Gerard, Suki Ports, Craig Harris, Paul Kawata, Marie St. Cyr, Patti Labelle, and Sandra McDonald in creating an early grass roots response to AIDS, a disease that does not discriminate against anyone.


Rochester AIDS History Chapter 14

Shoulders To Stand On                                                               EC May Issue 2016

Last month we looked at ACT-UP.  This organization was on the front lines working the pharmaceutical companies , federal, state and local governments and health departments to provide resources to fight AIDS.

Understanding how funding for AIDS on the Federal and State level is broken down is important in understanding the importance given to AIDS over the past 35 years by governmental agencies.  Understanding the financial allocation of resources to meet and defeat this epidemic is critical to advocacy efforts and public demand for funding for research and treatment in the general population and especially minority communities where the number of AIDS cases is increasing.

On the Federal level funding for HIV/AIDS increased from $200,000 in 1981 when the first 5 AIDS cases in the US were documented to $233,793,000 in 1986 – an increase of 1168%.  Below is president Obama’s budget request for funding for HIV/AIDS for 2016.  You will note that the budget is broken down into Discretionary Spending and Mandatory Spending.

Discretionary Spending includes:

NIH – The National Institute of Health (NIH) isthe principal agency of the federal government

charged with the conduct and support of  biomedical and behavioral research. NIH conducts

research at its own 27 institutes and centers (the university of Rochester being one of them) and supports more than 200,000 scientists and research personnel working at over 3,100 U.S. institutions.  Funding for AIDS research is distributed among the NIH institutes in accordance with the scientific priorities identified in the annual comprehensive plan for AIDS research developed by the institutes along with the Office of AIDS Research (OAR) established in statute by the National Institutes of Health Revitalization Act of 1993 .

CDC – The Center for Disease control (CDC) is the agency that works with community, state,

national, and international public health agencies to prevent HIV infection and reduce AIDS-associated morbidity and mortality through its information and education programs. CDC also supports  research, surveillance, and epidemiology studies on HIV/AIDS. CDC distributes

much of its HIV funds to state and local agencies through cooperative agreements, grants, and contracts.

HRSA –The Health Resources and Services Administration (HRSA), an agency of the U.S.

Department of Health and Human Services, is the primary Federal agency for improving

health and achieving health equity through access to quality services, a skilled health

workforce and innovative programs. The HIV/AIDS Bureau within HRSA administers the

Ryan White program, a four-part federal grant program designed to provide emergency relief

and essential health care services to patients infected with HIV.  HRSA’s programs provide

health care to people who are geographically isolated, economically or medically vulnerable.  OTHER DOMESTIC DISCRETIONARY includes:

   HIV/AIDS Minority Initiative

In 1998 the White House announced a series of initiatives targeting appropriated

funds for HIV/AIDS prevention and treatment programs in minority communities.

The Congressional Black Caucus worked with the Clinton Administration to

formulate the approach.  This includes funding for the Office of Minority Health, and the Office of Women’s Health.

International HIV/AIDS Programs 

In January 2003, President Bush announced in the State of the Union speech a fiveyear

$15 billion program, the President’s Emergency Plan for AIDS Relief (PEPFAR).13 The five-year program targets countries with a very high prevalence

of HIV infection.


U.S. Federal Funding for HIV/AIDS: The President’s FY 2016 Budget Request
(Source: Kaiser Family Foundation)

(USD $ Millions)
FY 2014 FY 2015 FY 2016
Ryan White Program2 $2,313.0 $2,318.0 $2,322.0
ADAP (non-add) $900.3 $900.3 $900.3
CDC Domestic Prevention (& Research)3 $786.7 $786.7 $799.4
National Institutes of Health (domestic only)4 $2,524.0 $2,528.9 $2,637.8
Substance Abuse & Mental Health Services Admin (SAMHSA) $180.3 $180.5 $180.5
Department of Veterans Affairs (VA) $1,047.0 $1,093.0 $1,155.0
Housing Opportunities for Persons with AIDS (HOPWA) $330.0 $330.0 $332.0
Other domestic discretionary5 $373.6 $387.1 $386.2
Subtotal discretionary $7,554.6 $7,645.0 $7,813.7
Medicaid $6,200.0 $6,600.0 $7,000.0
Medicare $6,600.0 $7,000.0 $7,500.0
Social Security Disability Insurance (SSDI) $2,031.4 $2,083.0 $2,142.0
Supplemental Security Income (SSI) $600.0 $605.0 $665.0
Federal Employees Health Benefits (FEHB) Plan $178.0 $191.0 $200.0
CDC Prevention and Public Health Fund $0.0 $0.0 $0.0
Subtotal mandatory $15,609.4 $16,479.0 $17,507.0
Subtotal domestic $23,164.0 $24,124.0 $25,320.7


NOTES: (1) Data are rounded and adjusted to reflect across-the-board  rescissions to discretionary programs as requered by appropriations bills in some years and some data are still considered preliminary.  FY 2015 represents the President’s request only and not final enacted amounts.  (2) Ryan White totals include $25 million for Special Projects of National Significance (SPNS) in each fiscal year.  (3) FY2014 funding levels at CDC include redistribed Business Services Support (BSS) funding to each CDC programmatic budget line and are therefore not directly  comparable to prior year levels. (4) The NIH does not define HIV research as “domestic” given its broad application.  However, for purposes of this analysis, all HIV research funding not designated as “global” was considered to be domestic research.

(5) “Other domestic funding” include amounts at: DHHS Office of the Secretary, Health Resources and Services Administration, Food and Drug Administration, Indian health service, Agency for healthcare Research and Quality, and the Departments of Defence, Justice and Labor.

As you can see this “pot” of money covers many programs and many people.  The HIV/AIDS healthcare for the nation rests on these resources.  Other Domestic Discretionary spending category includes the HIV/AIDS Minority Initiative.  For the 2016 requesrted budget it is less than 5% of the total Discretionary budget.

Shoulders will look at HIV/AIDS in minority communities in the June issue even though documentation on these populations is lacking.  Given the increase in HIV/AIDS cases in minority communities, we need to understand some of the barriers and restraints that effect the successful identification and treatment of members of the African American, Hispanic and women’s communities.  Shoulders To Stand On praises the efforts of the Obama administration, of Gov. Cuomo to “End the Epidemic by 2020”, of the Center For AIDS Research at the University of Rochester and of  Dr. Bill Valenti to successfully treat and “end” this epidemic.  These are not enough!  To quote Hillary Clinton, “It takes a village.”  WE ALL NEED TO DO OUR PART!




Rochester AIDS History Chapter 13

Shoulders To Stand On                                                               EC April Issue 2016

A Community’s Response To AIDS – ACT-UP

While the government failed to respond to the epidemic, a number of non-governmental organisations were founded in the most affected areas of the USA such as The Kaposi’s Sarcoma Research and Education Foundation in San Francisco (later renamed the San Francisco AIDS Foundation) and, in New York, Gay Men’s Health Crisis (GMHC). In 1982 GMHC distributed 50,000 free copies of its first newsletter about the syndrome to hospitals, doctors, clinics and the Library of Congress.  The New York State Health Department AIDS Institute was created in summer of 1983 which created AIDS Task Forces across the state in major cities.  The Rochester Area Task Force on AIDS was established in the Fall of 1983.  At about the same time AIDS Rochester was founded.   Through the leadership of the University of Rochester, New York City Medical Center and Beth Israel, and the New York State Health Department’s AIDS Institute the infrastructure for dealing with this disease in New York state was in place within two years of the mention of AIDS in June, 1981 by the CDC.  Federal and State funding for treatment, research, and education was little and did not go far.  When Ronald Reagan mentioned the word AIDS in September, 1985,  the US Governemtn allocated $70 million for AIDS research

In 1986, the Federal Budget increased its AIDS allocation by 113%.  The University of Rochester was designated by the National Institue of Health as an AIDS Drug treatment and Research Center.  AZT went into clinical trials.  By the end of 1986 there were 37,061 AIDS cases Nationwide and 16,301 people had died.  There were 60 cases in Monroe County, and 36 of those were reported in 1986 alone which was more than all cases in the previous 4 years.  There were 9 new cases reported from non-urban counties for a total of 13.

In October 1985 several people with AIDS and ARC (AIDS-related complex) began a 24-hour -a-day vigil outside the federal building in San Francisco to demand increased govemment action to combat the AIDS epidemic. On Dec. 11, 1987 the San Francisco police began to arrest the

protesters.  These acts of civil disobedience were only one part of a national effort to bring attention to AIDS.  In March 1987 a group of gay men and lesbians in New York City formed the “AIDS Coalition, to Unleash Power” now known by its acronym “ACT UP.” Angered by government mismanagement of the AIDS crisis on local, state and federal levels, ACT UP members began staging demonstrations in metropolitan New York City  to focus attention on AIDS issues.

Shortly after forming the group, members held a demonstration on Wall Street to protest the ex~

tremely high cost of AZT (also known by its commercial name, Retrovir). According to ACT UP

average yearly cost of providing the drug to people with AIDS was $10,000 to $13,000. ACT UP claimed success when, shortly after the demonstration. Burroughs Wellcome, the company that manufactured AZT. reduced the cost of the drug by 20 percent.

ACT UP’s slogan “Silencc=Death” was instrumental in radicalizing gay men at the “Agitate, Educate, Organize” forum held on Oct. 12 in Washington, D.C. as part of the March on Washington activities. Participants at that meeting called for a week of mass education and agitation from April 29 to May 7, 1988.  In response to the forum’s call for a week of mass education and agitation from April 29 to May 7, 1988, Martin Hiraga and Paul Scheib brought a group of gay men and lesbians together on Jan. 11, 1988 to form Rochester ACT UP (AIDS Coalition to Unleash Power).  Rochester ACT UP organized as a non-partisan, non-violent direct action group.  Members of the group pledged to keep AIDS issues in the public eye through mass education and demonstrations.  The group recognized and praised the unique and irreplaceable work support organizations such as AIDS Rochester,Inc. have done to educate the public about AIDS and the issues of people with AIDS.  Rochester ACT UP formed as part of a nationwide network of AIDS activist organizations that demand immediate full-scale action to combat the epidemic. The rights of people with AIDS and the rights of those at risk for the disease were another focus of concem for Rochester. ACT UP.

Rochester ACT UP claimed its work would be different from the work of support networlcs and

AIDS agencies, and deliberately did not seek the endorsement of these agencies and gay and

lesbian community groups. Thc group’s immediate focus was lobbying local officials and congressional delegations for increased funding for AIDS education and research. The group monitored all elected officials’ votes on major AIDS issues to keep the local gay, lesbian and bisexual communities upto date.  Members of Rochester ACT UP made plans to demonstrate at the Democratic debates in April.  Plans were also made to organize local seminars in conjunction with other activist groups throughout the country during the first week of May. Local demonstrations and acts of civil disobedience were planned.

In an article written in the February, 1988 EmptyCloset , Martin Hiraga explained that AIDS activist organizations use civil disobedience to focus attention on issues they feel private

industry and govemments have ignored. When they believe they have exhausted all other avenues to influence agencies and individuals in a position to move AIDS research and education forward, then they resort to demonstrations and Civil Disobedience.

Participatton in Rochester ACT UP ranged from those who are publicly involved in demonstrations to those who work quietly on committees to promote expanded AIDS education and legislation.  One lesbian member of Rochester ACT UP describes herself as someone who contributes by baking cookies and writing letters.  Lobbying and other legislative acdvities, along with mass education, made up thc bulk of Rochester ACT UP’s activities.

Rochester ACT UP and its members take no stand on individual medical or pschotherapeutic

treatments for people with AIDS. Their focus is on lobbying and demonstrating for stepped-up

research into new treatments and increased funding for current research, education and treatment.

The group met at the Gay Alliance of the Genesee Valley. 713 Monroe Ave., at 7 p.m. on

Monday, Feb. 9 and Wednesday. Feb. 24.  They continued to meet throughout 1988 to organize actions and strategically plan on the most effect ive ways to educate the general public and lobby state and federal governments for increased funding for research.

ACT UP Rochester is not active at this time.  Since it’s birth in March 1987 at the Lesbian and Gay Community Services Center in downtown Manhattan, the AIDS Coalition To Unleash Power (ACT UP) grew to have thousands of members in 70+ chapters in the U.S. and worldwide.  ACT UP’s non-violent direct action, often using vocal demonstrations and dramatic acts of civil disobedience, focused attention on the crucial issues of the AIDS crisis: lack of research and clinical trials for promising drugs, slow FDA approvals, profiteering of pharmaceutical companies, housing, and the inadequate local, state and federal response to the AIDS crisis.

Shoulders to Stand On is proud of the quick effective grass roots response the Rochester LGBT community made to the AIDS crisis in the 1980’s.  Shoulders is grateful for the activism of ACT UP  and it members, and recognizes the passion, commitment and dedication  of Martin Hiraga and Paul Scheib, the founders of ACT UP Rochester, to fight for increased funding for AIDS education and research.  For more info:

Rochester AIDS History Chapter 12

Shoulders To Stand On                                                               EC February Issue 2016

A Community’s Response To AIDS – Ronald Reagan Speaks About the AIDs Epidemic, the First Report on AIDS and Research Beginnings at the University of Rochester.

In January, 1986 Anthony Fauci, Director of the National Institute of On Allergy and Infectious Disease (NIAID), stated in the New York Times that one million Americans have already been infected with the virus and that this number will jump to at least 3 million or 3 million within 5 to 10 years.  AZT Phase II testing of AZT began in February with 300 patients at Tulane University School of Medicine, New Orleans, Louisiana and Bellevue Hospital, New York university medical Center, NY, NY.  A placebo control group was used initially, but was dropped quickly when 16 on the placebo died as opposed to only one on AZT.  The clinical trial was stopped in September, 1986 because it was thought to be unethical to deny patients in the placebo group a better chance of survival.  In March the local anonymous testing program reports it is testing 40 people a week, and approximately 10% test positively.  In 1986 NIAID establishes ‘Division of AIDS’.  In September, the University of Rochester is designated by the National institute of Health (NIH) as an AIDS Drug Treatment and Research Center.  In December, Strong Memorial Hospital becomes a designated AIDS Center and receives funding from the AIDS Institute.  During 1986, the use of condoms was shown to prevent sexual transmission of AIDS, and the World health Organization recommends needle exchange.  Locally here in Rochester there was much controversy over this before it was passed by New York in 1992.

After Rock Hudson died in October, 1985, in February of 1986 President Ronald Reagan instructed his Surgeon General C. Everett Koop to prepare a report on AIDS.  (Koop was excluded from the Executive Task Force on AIDS established in 1983 by his immediate superior, Assistant Secretary of Health Edward Brandt.)  Without allowing Reagan’s domestic policy advisers to review the report, Koop released the report at a press conference on October 22, 1986.  Rep. Henry A. Waxman (D-CA0 according to the New York times, February 6, 1986, states Reagan’s pronouncement “outrageous” because Reagan’s budget, made public February 6, included reductions in spending for AIDS research.  Earlier in 1985, Reagan refused to advocate safer sex and condom use, choosing instead to press for a ban on HIV-positive immigrants entering the country, then later sexual abstinence as the keys to preventing the epidemic.  Twenty million copies were eventually distributed to the public.  In plain language the 36-page report discussed the nature of AIDS, its modes of transmission, risk factors for contracting the disease, and ways in which people could protect themselves, including use of condoms. It projected that in 1991, 270,000 cases of AIDS would have occurred. The prediction was too pessimistic, as the total reported cases of AIDS in the U.S. through 1991 turned out to be 206,000, a measure of the effectiveness of Koop’s AIDS education campaign. In his remarks Koop emphasized that since education was the best and only strategy of prevention against AIDS, and since AIDS was spread primarily through sex, school children from grade three onward should receive sex education.  Over the next two years Koop emphasized that the best protection against the disease was provided by sexual abstinence and monogamy.  The first national coordinated AIDS education campaign was finally launched in May, 1988 when 107 million brochures entitled “Understanding AIDS” were mailed to every household across the country.  By this point nearly 83,000 cases of AIDS had been identified in the USA, and over 45,000 people had died.  Six other nations had set up leaflet campaigns before the USA chose to do so.

In April, 1986 the Rochester Area Task Force on AIDS (RATFA) convenes working groups on community education, long term care and legislative issues.  Susan messenger serves as Co-Chair with Dr. William Valenti.  In September a report is presented to RATFA entitled, ‘AIDS Impact on the Minority Community.  Discussion and planning began to expand representation on the Task Force.  In December RATFA forms the “Minority Committee”.  Seventeen agencies were invited to attend a special meeting to begin addressing education and service needs of the Rochester minority population.

In February, 1986 Ryan White, because of his HIV diagnosis, is banned from attending his seventh grade classes by Circuit Court Judge R Alan Brubaker in Howard county, Indiana after returning to school for one day following a 15-month absence.   The decision was overturned on November 25, an Indiana Department of Education officer ruled that the school must follow the Indiana Board of Health guidelines and that White must be allowed to attend school.  In August 1990, four months after White’s death, Congress enacted The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act (often known simply as the Ryan White Care Act), in his honor. The act is the United States’ largest federally funded program for people living with HIV/AIDS. The Ryan White Care Act funds programs to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families.

In April, 1986 attorney Geoffrey Bowers, litigation associate at Baker & McKenzie, an international law firm, was diagnosed with Kaposi’s sarcoma and AIDS.  Lesions began to appear on his face.  In May 1986 the law firm’s partners gave Bowers a satisfactory evaluation. Two months later, in July, they voted to dismiss him, without following normal termination processes, including consulting with his supervisor or asking for a list of his clients and billable hours. His supervisors objected to the decision, delaying its implementation. However, in October, 12 of the 15 partners again voted to dismiss him. He left the company on December 5, 1986.  The firm maintained he was fired purely for his performance.  Geoffrey sued the firm in one of the first AIDS discrimination cases to go to a public hearing.  On July 14, 1987, the New York State Division of Human Rights held the first hearings in the case.  Six years later the case was finally resolved.  Geoffrey died in September, 1987 and his partner died one year later.  Geoffrey’s family continued the lawsuit, and in December 1993 the agency awarded its largest sum for any complaint to that date: $500,000 in compensatory damages and the back pay he would have earned had he remained employed.  Baker & McKenzie appealed but subsequently withdrew the appeal in 1995 after they negotiated a confidential settlement with Bowers’ family, forbidding parties from ever discussing the case or the terms of the agreement.  These events were the inspiration for the 1993 film Philadelphia.

Over the course of 1986, the tide was beginning to turn.  Shoulders To Stand On is proud of the contributions made by C Everett Koop, the University of Rochester, Strong Memorial Hospital, and the Rochester Area Task Force on AIDS in making AIDS visible, in making research possible and in providing the Rochester community with cutting edge information and access to care.  Shoulders To Stand On also applauds the courage shown by Ryan White, Geoffrey Bowers and their families to confront the prejudice and injustice shown to those infected.

Next month – the story of early treatments, research trials and celebrities.



Rochester AIDS History Chapter 11

Shoulders To Stand On                                                               EC February Issue 2016

A Community’s Response To AIDS – The Year AIDS Hit Home – 1985

In January the CDC reports provisional Public health Service interagency recommendations for the screening of donated blood for antibodies to HTLV-II/LAV, and warnings are given to the heterosexual community in the belief that AIDS poses a threat because of the continued unabated transmission of AIDS.

In February the Pasteur institute researcher Dr. Jean Claude Cherman reports a new compound drug, HPA-23, appears for first time to have inhibited reproduction of the AIDS virus.  During this time groups of Protestant, roman Catholic, and Jewish leaders issue joint statements calling on the public ‘not to stand in judgment’ of PWA’s, but to show compassion.

During February, AIDS Rochester applied for grants to fund the ARIES Project, AIDS Rochester Expanded Services Project from New York State Dept. of Health, and other local and national funders.  AIDS Rochester received a $30,000 NYS Dept. Of Health and AIDS Institute Grant for a Risk Reduction Program.

In March the first blood test for identifying antibodies to HIV developed by Abbott laboratories was licensed and began to be used in blood banks to protect the blood supply.  NYS established an “alternative testing program” later known as the anonymous HIV Counseling and Testing program.  Official statements discouraged test of persons at high risk because it offered “no definitive medical information.  The Rochester Area task Force on AIDS released information on testing.  The following month several Task Force members traveled to Atlanta for the First International Conference on AIDS.  Less than 10 agencies participated.  In June the AIDS test method of detecting antibodies in blood samples is patented for the Dept. of Health and Human Services by Drs. Robert Gallo, Mikulus Popovic, and M G Sarngadharan, and scientists have discovered the gene in virus that causes AIDS.

In May, the New England Journal of Medicine reported that the AIDS virus may persist without symptoms for more than 4 years.  It is confirmed the AIDS virus is caused by virus LAV or HTLV-III and that even close contact with AIDS patients in hospitals by doctors, nurses, health care workers is unlikely to spread the disease.

In July, fourteen year old Ryan White becomes the first youth to be barred from attending his middle school in Kokomo, Indiana because he contracted AIDS while being treated for hemophilia.  Indiana hearing officer rules that Ryan can return to school in November.  Los Angeles follows suit by barring a 3 year old boy from class for handicapped children.  In response the CDC issues guidelines indicating school-aged children infected with the AIDS virus should be allowed to attend school, and school officials should do their best to protect the pupils’ privacy.  However the guidelines recommended that preschoolers and handicapped children be kept out of school until more is known about how the disease is transmitted.  The CDC also recommended that adoption and foster care agencies administer AIDS antibody tests to children whose parents are in high risk groups, or whose parent’s histories are not know.  In August, parents in two school districts in Queens, NY organized a boycott to protest city’s decision to allow second-grader with AIDS to attend regular classes.  11,000 students stay home from school the first day, 9,000 the second day.  At the same time a 5 year old with AIDS is barred from attending school in Orange County, Florida.  In December a school district in Hazelwood, Missouri drops training in cardiopulmonary resuscitation because of fear of exposure to AIDS.

In August, Rock Hudson announced that he had AIDS. He had been diagnosed with it on June 5, 1984.   On September 17, 1985 President Ronald Reagan publicly mentioned AIDS for the first time, when he was asked about AIDs funding at a press conference.  “I have been supporting it for more than 4 years now. It’s been one of the top priorities with us, and over the last 4 years, and including what we have in the budget for ’86, it will amount to over a half a billion dollars that we have provided for research on AIDS in addition to what I’m sure other medical groups are doing”.  A House appropriations subcommittee was told that $70 million more was needed for AIDS Research and treatment, twice what the Reagan administration had originally requested.

Critics were quick to ask why, if AIDS had been a ‘top priority’ among the government, the president had not mentioned it in public before.  President Reagan refused to advocate safer sex and condom use, choosing instead to press for a ban on HIV-positive immigrants entering the country, then later sexual abstinence, as the keys to preventing the epidemic.

Simultaneously the insurance industry feared large claims by PWA’s.  The industry tried to find ways if applicants had AIDS.  In October, Lincoln National Life insurance Co. instructed their underwriters to examine applicant’s personal lives and use marital status, age, and residence in an attempt to screen out possible PWA’s.  Company policy was that marital status is a possible indicator of homosexuality.  Underwriters were told to flag applicants if ‘Lifestyle, habits, or medical history suggest a person is in one of the AIDS risk groups.’  Company spokesman, Al Parsons, defended suggestions noting high medical costs were often incurred in AIDS treatment.

In September, the ‘Night of 1000 Stars’, an AIDS benefit in Hollywood raised $1.3 million for AIDS Research.  Dame Elizabeth Taylor, Dr. Michael Gottlieb, and Dr. Mathilde Krim announce the creation of the American Foundation for AIDS Research in September 1985.  Dr. Michael Gottlieb, the doctor who first identified the AIDS virus, was Rock Hudson’s doctor.  Dr. Gottlieb tells the story that Rock agreed to go public with his diagnosis if it would help get the word out and save lives.  On October 2, 1985, the actor Rock Hudson died of AIDS. He was the first major public figure known to have died from an AIDS-related illness.  His death creates a national swell of support for AIDS research.

In November, here in Rochester, requests for education and testing increased with intense media focus on AIDs.  The anonymous testing program is testing 10 people a week and five of 93 tests done in 1986 were positive.  Early in November, the film An Early Frost, the first film to cover the topic of HIV/AIDS, is broadcast in United States on prime time TV on NBC.

For the AIDs crisis, the 12 months of 1985 demonstrated the fear of the disease and the beginning glimmers of hope for the medical community to get a handle on this continuing epidemic.  Shoulders to Stand On shares its pride with you our readers for the courageous efforts of AIDs Rochester, the Rochester Area Task Force On AIDS, and Rock Hudson, Liz Taylor and many others to intervene to stop the epidemic.  Please pay special attention to NYS current inititiative to End the Epidemic by 2020.  For more information go to:

We are not finished fighting this epidemic. It will take all of us working together to identify those not in treatment to End the Epidemic.




Rochester AIDS History Chapter 10

Shoulders To Stand On                                                               EC December/January Issue 2015

A Community’s Response To AIDS – A Pivotal Year 1984

The year 1984 was an extraordinary year for AIDS research, testing, drug treatment, and the politics of AIDS.  Each of these threads is interwoven with a community’s fear and ever increasing numbers.  The overwhelming effect of AIDS on Rochester is about to reach new heights.  The year 1984 creates hope and at the same time the number of AIDS cases in Monroe County begins to grow exponentially.  In Monroe County in 1984 there are 12 identified cases of AIDS, in 1985 there were 24, in 1986 there were 60, in 1987 there were 101, and the number was growing quickly.

From the earliest reports of a new disease, scientists around the world focused their efforts on finding the cause of AIDS. They circulated information informally; they held meetings to exchange ideas; and they published promising findings. A pioneer in this effort was Dr. Robert Gallo of the National Cancer Institute, who only recently had discovered the first two human retroviruses, HTLV-I and HTLV-II. In 1984, research groups led by Dr. Gallo, Dr. Luc Montagnier at the Pasteur Institute in Paris, and Dr. Jay Levy at the University of California, San Francisco, all identified a retrovirus as the cause of AIDS. Each group called the virus by a different name: HTLV-III, LAV, and ARV, respectively. As has happened many times in scientific history, contention emerged about who had been first. In 1987, the president of the United States and the prime minister of France announced a joint agreement on the issue–the first time a medical research question had reached this level of political negotiation. More importantly, the identification of that virus, renamed human immunodeficiency virus, or HIV, that mainly attacks T-4 cells (which help the production of antibodies) and renders the body’s immune system incapable of resisting infection,  provided a specific target for blood-screening tests and for scientists around the world conducting research to defeat AIDS.

The who question becomes in some ways insignificant in comparison to the results.  Now scientists were able to develop processes to mass produce the virus with the purpose of developing tools to conquer AIDS. By the fall of 1984, not only had a retrovirus been identified as the cause of AIDS, it also had been shown to have properties that would make it very difficult, if not impossible, to make a conventional vaccine against AIDS.  By April, 1984, four thousand plus Americans were infected with the disease.  By the end of 1984 that number would skyrocket to 10,000.

AIDS is the last stage in a progression of diseases resulting from a viral infection known as the Human Immunodeficiency Virus (HIV or AIDS virus). The diseases include a number of unusual and severe infections, cancers and debilitating illnesses, resulting in severe weight loss or wasting away, and diseases affecting the brain and central nervous system.

By January of 1984, new evidence was reported that AIDS can be spread heterosexually and transmitted even before a person shows outward manifestations of the disease.  In fact, in May of 1985, an AIDS symptoms report in the New England Journal of Medicine indicated that the AIDS virus may persist without symptoms in infected people for more than four years.  Prior to 2003, when effective therapies became available, and therefore from 1984 – 2002, about 10% of HIV infected people progressed to AIDS within 2 or 3 years of infection (rapid progressors). About 60% of adults/adolescents progressed to AIDS within 12–13 years (slow progressors).

Today, the percentages are somewhat different.  Without treatment,  80-87% progress within 12 – 13 years (typical progressors); 3 – 5% are symptom free with good T4 cell counts after 8 – 15 years (non-progressors) and less than 1% control the infection to viral loads less than 50 copies in absence of treatment (elite controllers) and 10% progress rapidly (~2years).

Without treatment, HIV advances in stages, overwhelming your immune system and getting worse over time. The three stages of HIV infection are: (1) acute HIV infection, (2) clinical latency, and (3) AIDS (acquired immunodeficiency syndrome).

There is still no cure for HIV infection or AIDS nor is there a vaccine to prevent HIV infection. However, there’s good news: by using HIV medicines (called antiretroviral therapy or ART) consistently, you can prevent HIV from progressing to AIDS. ART helps control the virus so that you can live a longer, healthier life and reduce the risk of transmitting HIV to others.  Currently anti-retroviral therapy is recommended for ALL patients with the goal of having no one progress to AIDS.

All treatment is based on the hypothesis that people will be tested to determine their status.  In October, 1984 Abbott Laboratories received FDA approval for a diagnostic to screen blood for antibodies to virus believed to be the cause of AIDS. The test, named ELISA or EIA (Enzyme-linked Immunosorbent Assay), did not diagnose AIDS, but instead detected antibodies produced by the body’s immune system to fight HTLV-III (Human T-Lymphotropic Virus Type-3) which had been identified as the probable cause of AIDS.  This Elisa Test would become known as the “AIDS Test”.  In December, 1984, University of California researchers used the test to detect AIDS virus in as many as 10,000 samples taken from blood donor centers.

Shoulders To Stand On will continue to look at AIDS Testing and issues that arose because of testing then and now in the February issue of the Empty Closet.  Shoulders To Stand On is in awe of the tremendous growth in knowledge and understanding of AIDS that took place in a very short period of time – 3 years from 1981 – 1984.  Shoulders also recognizes the risks and risk takers –  Dr. Robert Gallo of the National Cancer Institute, Dr. Luc Montagnier at the Pasteur Institute in Paris, and Dr. Jay Levy at the University of California, San Francisco – involved in learning about the disease and identifying the virus that causes AIDS.



Rochester AIDS History Chapter 9

Shoulders To Stand On                                                                            EC November Issue  2015

A Community’s Response To AIDS – Early Rochester Community AIDS Education

With the identification of AIDs in June, 1981 by Dr. Michael Gottlieb, U of R Medical Center trained physician, the CDC in September, 1981 chose Rochester as one of six U. S. cities where a special watch for cases of pneumacystis and also AIDS – known in 1983 as the “gay cancer”  – was undertaken.  The CDC assigned Dr. Alain Roqsin at the Monroe County Health Department to watch for these cases.  Over the next 24 months, Sue Cowell at the University Health Services, the Monroe County Health Department, and the U of R Medical Center Infectious Disease Unit began educating the community about this “new” disease.   The Empty Closet newspaper became the primary source for information on the disease.  The EC began AIDS Updates in June, 1983 and an AIDS Directory beginning in May, 1990.  Beginning in May, 1983 Sue Cowell wrote a monthly column on Health which covered information about AIDS, and issues in both women’s and men’s health.

The Rochester community responded quickly to this new infectious disease, AIDS.  Through the leadership of the University of Rochester, the Gay Alliance, and the New York State Health Department’s AIDS Institute the infrastructure for dealing with this disease began to be put in place.  In 1982, Sue Cowell at the University Health Services began holding meetings with an ad hoc group of volunteers to address the needs of local persons with AIDS, a local AIDS hotline was staffed by volunteers at the Gay Alliance, Dr. Tom Rush at the U of R Medical Center Infectious Disease Unit began the first local clinic for AIDS (October, 1982),   In April, 1983 the first local AIDS prevention literature was produced with the help of the American Red Cross.  In May, 1983 the ad hoc group of volunteers became AIDS Rochester, and the first symposium for medical providers was held at the Monroe County Medical Society with Dr. Michael Gottlieb, MD as guest speaker.  In the Fall of 1983, the Rochester Area Task Force On AIDS (RATFA) was established, and served as an advisory board to AIDS Rochester.  Drs. Roy Steigbigel and Ray Mayewski were among the first doctors to see AIDS patients here in Rochester.  At the end of 1983 there were 4,156 AIDS cases nationwide.  There were 7 cases in Monroe County.

In March, the Empty Closet ran the front page story, “AIDS Threat Increases: Two Cases contracted locally.”  As awareness grew that AIDS was a threat in areas outside of NYC, County Manager, Lucien Morin, designated Monday, September 10 through Sunday, September 16 as the first AIDS Awareness Week with a proclamation and a range of educational events.

In the September, 1984 issue of the EC, Jackie Nudd, Executive Director of AIDS Rochester, Inc. said,   “Lucien Morin’s proclamation is an indication that local leaders are truly taking a look at what AIDS means to the general community.  One of the general functions of AIDS Awareness Week is to educate aad reach out to all segments of the community.”

A symposium on AIDS was held on Sept. 10 at the Clifton Springs Hospital and Clinic for health care workers from a four-county area.  A second symposium sponsored by AIDS Rochester Inc.

and the Infectious Control Unit at Strong Memorial hospital was held on Sept 14 at the Rochester Academy of Medicine.  Seven speakers including Jackie Nudd; David Putnam, the AIDS Public Health Representative for the New York State Department of Health; Dr. William Valetiti, an epidemiologist at Stroag Memorial Hospital and co-chairman of the Rochester Area Task Force on AIDS discussed a variety of  AIDS – related topics, including Treatment, psycho-social issues, reporting of AIDS cases, dental problems of persons with AIDS  community awareness, resources and education.  On Sept. 14 an open forum on AIDS free and open to the public, sponsored by AIDS Rochester Inc. aad the Gay Men’s Health Cemer of New York City, was held in Hubbell Auditorium at the University of Rochester. Along with education, local community fundraising was critical to support AIDS research and other services.  AIDS Rochester in January of 1984 received a $40,000 from NYS AIDS Institute, but state moneys were not available for ALL of the services that were needed, and so local communities had to step up to the plate.   Rochester did.

AIDS Rochester continued the AIDS hotline, the U of R and the County Health Department continued to educate the community, and the EC covered the AIDS story across the country.  By the end of 1984 there were 9,920 AIDS cases nationwide and 12 cases in Monroe County.  Within 5 years the number of cases in the Rochester area would rise to 300.

Shoulders To Stand On will continue the history of A Community’s Response To AIDS in the next  issue. focusing on education and testing.  Shoulders To Stand On is proud of the early work done by AIDS Rochester, the County Health Department and the U of R in educating a frightened community about an epidemic that overwhelmed the community.  Educating the public, researching a cure, improving treatment continues today.  We are by no means finished.


Rochester AIDS History Chapter 8

Shoulders To Stand On                                                                                EC October Issue  2015

A Community’s Response To AIDS – Center for Disease Control Early Response

Recognition of the emerging epidemic was gradual in NYS, as elsewhere.  After the Centers for Disease Control declared that the number of cases of Kaposi’s Sarcoma (KS) and Pneumocystis carinii pneumonia (PCP) had reached epidemic proportions. individuals and groups, particularly gay men, organized for mutual support and to seek help. AIDS Rochester was the first grass roots community based organization in Rochester to respond to the AIDS epidemic and among the first in NYS.  In January of 1982, the Gay Men’s Health Crisis, Inc. (GMHC), the nation’s first HIV/AIDS community-based organization, was established in NYC.  GMHC  was created when 80 men gathered in New York writer Larry Kramer‘s apartment to discuss the issue of “gay cancer” and to raise money for research.  GMHC took its name from the fact that the earliest men who fell victim to AIDS in the early 1980s were gay.

The founders were Nathan Fain, Larry Kramer, Lawrence D. Mass, Paul Popham, Paul Rapoport and Edmund White.  They organized the formal, tax-exempt entity. At the time it was the largest volunteer AIDS organization in the world. Paul Popham was chosen as the president. Rodger McFarlane began a crisis counseling hotline that originated on his own home telephone, which ultimately became one of the organization’s most effective tools for sharing information about AIDS. He was named as the director of GMHC in 1982, helping create a more formal structure for the nascent organization, which had no funding or offices when he took on the role. GMHC operated out of a couple of rooms for offices in a rooming house in Chelsea owned by Mel Cheren of West End Records.

Larry Kramer wrote that by the time of McFarlane’s death, “the GMHC is essentially what he started: crisis counseling, legal aid, volunteers, the buddy system, social workers” as part of an organization that serves more than 15,000 people affected by HIV and AIDS. In an interview with The New York Times after McFarlane’s death in May 2009, Kramer described how “single-handedly Rodger took this struggling ragtag group of really frightened and mostly young men, found us an office and set up all the programs.”

Kramer grew frustrated with bureaucratic paralysis and the apathy of gay men to the AIDS crisis, and wished to engage in further action than the social services GMHC provided. He expressed his frustration by writing a play titled The Normal Heart, produced at The Public Theater in New York City in 1985. His political activism continued with the founding of the AIDS Coalition to Unleash Power (ACT UP) in 1987, an influential direct action protest organization with the aim of gaining more public action to fight the AIDS crisis. Kramer resigned in 1983 to form the more militant ACT UP (the AIDS Coalition to Unleash Power) as a more political alternative.  Early in 1988 Martin Hiraga helped start ACT UP Rochester.  More on ACT UP Rochester in a later issue.

By May 1982, even though the cause of the disorder having KS and PCP as symptoms was unknown, researchers had begun to call it A.I.D. for acquired immunodeficiency disease, or GRID, for gay-related immunodeficiency. The term“AIDS,” for acquired immunodeficiency syndrome, was coined by the CDC in 1982.

By the end of 1982, however, it was clear that others – not just homosexual men – were at risk for the disease, and what had been complacency turned into serious concern, even panic. Many persons caring for AIDS patients were concerned about their own safety and, in some cases, health-care workers refused to provide needed care. To provide guidance for protection of clinicians and laboratory workers managing patients with AIDS and their biologic specimens, CDC issued guidelines in November 1982 that were based on those previously recommended to protect against hepatitis B virus infection.

In March 1983, CDC, in conjunction with the Food and Drug Administration and the National Institutes of Health (NIH), issued interagency recommendations for the prevention of AIDS on the basis of the epidemiologic data.  These recommendations, which were immediately endorsed by a variety of professional and community organizations, were developed before the cause of the syndrome was discovered and 2 years before antibody testing would be available for diagnostic testing of individuals or screening of blood donations. Yet, even in retrospect, the recommendations appear to have been essentially correct. They illustrate the power of epidemiologic investigation in understanding and preventing new diseases, even in the absence of an identified cause.

The causative retrovirus was described by Drs. Francois Barre-Sinoussi and Luc Montagnier and their colleagues from the French Pasteur Institute in May 1983 (27). Additional proof of causality, as well as the demonstration of sustained viral growth in vitro, was reported by Dr. Robert Gallo and colleagues at the U.S. National Cancer Institute, NIH, in 1984 (28). In 2008, Drs. Barre-Sinoussi and Montagnier were awarded the Nobel Prize in medicine for their discovery of human immunodeficiency virus (HIV).  Researchers discovered the means by which AIDS was spread, namely through sexual intercourse, the sharing of contaminated needles among intravenous drug users, transfusion of infected blood, and transmission from pregnant mother to child in utero, during birth, or during nursing. A blood test to detect antibodies to HIV and a technique for killing the virus in blood products were developed in 1985, making the blood supply once again safe for transfusion, and clotting factors safe for hemophiliacs.

With no cure and no vaccine, educating the public on how AIDS was transmitted, who was at risk, and how to protect oneself was the only way left to slow the spread of the disease.  AIDS Rochester became the “educator” on AIDS in Rochester.  In November, Shoulders to Stand On will look in greater detail at Rochester’s educational response to the AIDS epidemic.