LGBT POV

UPDATE: A MEMORIAL FOR HOWARD JACOBS WILL BE HELD ON SUNDAY, NOV. 15, AT 1:30PM AT CONGREGATION KOL AMI, 1200 N. LA BREA AVE., WEST HOLLYWOOD, CA 90038.

Longtime HIV/AIDS Activist Howard Jacobs Dies

Startling and sad news: longtime HIV/AIDS, youth, disability and social services activist and all-around good guy Howard Jacobs died from liver cancer this morning. He was 45, with a birthday coming up.

Howard’s former boss, West Hollywood City Councilmember Jeff Prang, sent out an email at 8:50 this morning:

Dear Colleagues,

I am sad to report that our former City Hall colleague, Howard Jacobs, passed away this morning at about 4:00 AM.  Howard worked as my Deputy for several years, and continued his service to the City as a Rent Stabilization Commissioner.

Howard lived with HIV/AIDS for over twenty years. He was a tireless and passionate advocate in the fight against HIV/AIDS, and on behalf of those in need of support and services, serving as Chair of the Board of Being Alive.  In recent years, his career took a different path, as he went to work for a number of agencies serving youth – including GLASS, and most recently, First 5 LA.

Howard was smart, sensitive, fearless, and unyieldingly committed to everything he believed in;  he believed deeply in West Hollywood and left an indelible mark on policies and programs of this City.

He was not only my former employee and appointee, he was a close friend, as he was to many here at City Hall.

His parents and family have decided to return to New York for burial, but at Howard’s request, we will have a memorial here in West Hollywood – I will let you know more information as it becomes available.

Thank you,

Jeff

In a follow-up conversation, Jeff told me that Howard’s death was unexpected. He went into the hospital about two weeks ago complaining about a pain in his side. He’d been in over the past few months suffering from a number of ailments, including hepatitis.

But this time he was diagnosed with a tumor, which had already consumed half his liver and, Jeff said, “there was nothing they would do.” It was too late for surgery or a transplant or chemotherapy, though they tried a little of that. “They just told him right away that it was just a matter of time.”

Jeff said that Howard’s close friend Catherine Hahn has been looking after Howard’s beloved dog Wilma and even snuck her into the hospital to see Howard several times in the week before he died.  Jeff said people have offered to adopt Wilma.

Howard’s sister lives in West Hollywood and his parents were also in town from New York, where they will take his body back for a funeral. Jeff said Howard wanted a memorial in West Hollywood, as well, which is being planned.

Independent producer and Frontiers In LA columnist Dana Miller, who was chair of the board of AIDS Project Los Angeles when Howard worked there, said:

“He was a strong, smart guy. He was always bustin’ my butt about something that was wrong about APLA…and I loved him for it. He and his voice will be so damn missed.”

Jeff Prang reiterated to me in a phone conversation how “deeply sensitive and passionate and committed” Howard was to helping people with HIV/AIDS and disabilities.  Jeff met Howard after he was elected to the city council in 1997 when Howard was serving on the city’s Disability Advisory Board. Jeff hired Howard as his council deputy and, Jeff said, Howard “educated” him on a number of policy issues four or five years – until 2003. Howard had to leave due to illness, but then he recovered.

Howard and his battles with HIV/AIDS were the subject of several news stories – including one in the Washington Post from 1991 that is actually quite timely:

“Howard Jacobs didn’t understand how his health insurance could have run out in September. Jacobs, who has AIDS, was told by a clerk at his local pharmacy that he had reached his maximum coverage for prescription drugs. No stranger to the byzantine world of health insurance bureaucracies, Jacobs surmised that his insurer had simply neglected to pay the bill.

It was no mistake, however. After wrangling with an insurance agent, Jacobs, 27, of West Hollywood, Calif., learned that his for- mer employer, New York City-based Tollman-Hundley Hotels, had cut its lifetime coverage for HIV-related claims from $1 mil- lion to $10,000. Jacobs, who was covered by the Tollman-Hundley insurance plan for 18 months after leaving his job there, was outraged.

“I want to scream and yell, `This is wrong!’ ” he said.

Jacobs’s case represents a growing trend that is of concern to the AIDS community as well as people with other terminal and chronic diseases. For many, it also raises doubts about the reliability of their health insurance. In cases being disputed in courts in several states, self-insured companies like Tollman-Hundley have singled out AIDS as one of the few conditions they are unwill- ing to fully cover. Instead, some companies are putting ceilings – sometimes as low as $5,000 – on the amount they will pay for treating the disease.

A Tollman-Hundley spokesman would neither confirm nor deny the policy, but bills from the insurance company that adminis- ters the plan state simply that Jacobs’s claims have been denied under Code 701 – an insurance industry reference meaning maxi- mum benefits have been paid.

To date, the company is denying more than $21,000 worth of claims – including a $15,075 bill for a recent hospital stay in which Jacobs battled his fourth attack of pneumocystis carinii pneumonia.”

“As a city councilmember, I get credit for policies that Howard, as my deputy, developed. My name’s attached to them, but they would not have happened if it had not been for Howard,” Jeff said. “He was the intellectual bulwark behind the development of programs – like the condom distribution program.”

This is from an AIDS Healthcare Foundation press release July 9, 1999:

“WEST HOLLYWOOD, Calif., July 9 /PRNewswire/ — In a move heralded by many local AIDS prevention and treatment activists as groundbreaking, the West Hollywood city council — overriding its own city staff & human services commission’s recommendation — voted 3 to 2 Tuesday to instruct staff to draft a plan for mandatory condom distribution in the city’s “high risk” bars, nightclubs and adult establishments. Staff had recommended a voluntary plan, but following impassioned testimony from activists the council voted 3 to 2 (Vote: Heilman, Koretz & Prang, YES; Guarriello and Martin, ABSTAIN) for mandatory distribution. Council also voted unanimously to adopt the staff and human services commission’s recommendation to increase the total number of condoms the city distributes (currently through the West Hollywood Cares program) to 250,000 — up from 36,000 — as part of a stepped up AIDS prevention effort.

AIDS Healthcare Foundation (AHF) earlier this year secured sufficient signatures to put before city voters a ballot initiative requiring such a program. City council member Jeff Prang helped convince AHF to delay action on its “West Hollywood ‘Safer Sex City’ Initiative” pending council action. The initiative would have required the city to implement and enforce a mandatory condom availability program.”

Howard convinced Jeff that while what AHF wanted “might not be ideal, it was important” for HIV prevention to provide condoms where people go – such as bars and nightclubs where alcohol and drugs are available and people might leave to have sex.  :Howard educated me that the fight was for a policy outcome where we could develop partnerships with business to make sure we have this important HIV prevention vehicle there.”

Howard was also on top of anti-smoking enforcement and finding ways to help people with disabilities, such as removing ficus trees that were an impediment to people in wheelchairs during the Santa Monica Boulevard redevelopment project. He also made sure that the access ramps ran both ways so people in wheelchairs wouldn’t find themselves running into traffic; and as staff liaison to the Disability community, he came up with innovative ideas such as creating a raised garden and wheelchair tennis. He was also instrumental in creating a Disability Awareness Month with televised meetings and awards in October.

When he left the city of West Hollywood and went to work at the non-profit GLASS (Gay and Lesbian Adolescent Social Services, which was forced to close for lack of funds), “he became as fierce an advocate for those kids as he was for HIV. He shifted his entire life to putting youth as a priority,” Jeff said.

Later he went to work for Rob Reiner’s youth organization, First Five LA. Jeff said that Howard was deeply involved in the budget battle in Sacramento – which had threatened to cut funding to the organization to balance the budget. The money stayed in.

“He was not ready to die,” Jeff said. “He was startled. It was such a shock that it was coming so soon. He was like a dear in the headlights.”

But his family was with him and he had a strong support network, Jeff said.

A memorial is pending.

Here is a bio from the One Tough Pirate website:

Howard Jacobs was born in New York City and moved to the West Hollywood in 1987.

As a graduate of Boston University with a degree in Hotel and Food Administration, Howard was employed as the Director of Purchasing/Food and Beverage Controller for Sheraton Grande Hotel in downtown Los Angeles as well as a Credit Manager for the J.W. Marriott Hotel in Century City (now the Park Hyatt Hotel).

Howard was diagnosed with AIDS on October of 1989 over 14 years ago. Soon into his diagnoses, Howard became a tireless advocate on behalf of people living with HIV disease. After seeing too many of his friends die, Howard began to volunteer at AIDS Project Los Angeles (APLA) in the Government Affairs department. Named as Volunteer of the Year in 1995 for APLA, Howard was honored for his leadership in Public Policy development from the organization.

Not only did he speak at public education forums on HIV prevention and large events such as the AIDS Walk, Howard, also, ran the Grass Roots programs for APLA creating a letter writing, e-mail, fax and direct one on one lobbying campaign to improve the quality of life for people living with HIV disease. In addition, he started a program for clients of the agency called Speak-Up so they could better advocate on their own behalf.

Members of these grass roots programs met with local, state and federal officials including former Secretary of Health and Human Services, Donna Shalala, Senators Dianne Feinstein and Barbara Boxer as well as Members of Congress including Henry Waxman and Maxine Waters.

Howard has been a strong community organizer. He has assisted in the development of annual county, state, and federal lobby day’s for the people affected and infected by HIV and developed a advocacy training program called Activate!U to educate people on ways to impact the legislative process.

In addition, he served as a member of the California State HIV CARE Consumer Advisory Board and chaired the Public Policy committee for the Los Angeles County Commission on HIV Health Services. He, furthermore, was a member of the LA City Housing Opportunities for People with AIDS Advisory Board.

Currently, he serves as the President of the Board of Directors for Being Alive/People with AIDS Action Coalition.

The impacts of triple combination therapies changed the long-term heath care outcome for Howard who returned to paid employment at APLA in June of 1998.

During this time, Howard was appointed to the Disability Advisory Board for the City of West Hollywood. He left the agency to work for Councilmember Jeffrey Prang from the City of West Hollywood in December 1998. At this point, Howard’s story was beginning to be chronicled by the Los Angeles Times, Westside Weekly section. He, in addition, wrote his own column describing the challenges of a person living with AIDS for this newspaper and other interested publications.

As a council deputy for Councilmember Prang, Howard has been a staff liaison to community advisory boards that have focused on disabled, senior, and gay and lesbian issues. During his tenure on these advisory bodies, the City has declared itself a sanctuary for people in need of medicinal marijuana, opened a raised garden bed for people with mobility impairments, created a recreation program for the disabled, increased funds for their HIV prevention programs, began a senior discount shopping program and commenced a recognition ceremony for same sex domestic partners in relationships of ten years or more.

Howard resides in West Hollywood and lives with his dog Wilma.

And here is a story Howard wrote, posted on that site:

Wake-Up Call from HIV

Living with HIV

By Howard Jacobs

June 2000

It has been said that adversity builds character. Since my AIDS diagnosis almost 11 years ago and surviving my most recent health crisis, I think character-building is well overrated.

“Chronic and manageable, miraculous recovery, full and productive life”: these are the headlines consistently being used when discussing HIV disease. After months with a non-detectable viral load and T-cells high enough to make me feel guilty for having so many, I believed these words.

“I am going to live forever,” I thought, not knowing what “forever” really meant, but understanding my present living situation needed to change.

Getting off Social Security, acquiring private health insurance and finding employment, I determined, was the best way to transition back into mainstream society. I felt great taking my first step working for a large AIDS-service organization. Six months later, I knew I was back as I began a job for the city I live in and appreciate working for a council member I respect and admire.

One and a half years later, the term “chronic and manageable” seemed to embody me. I was comfortable striking the balance between taking medications, seeing the doctor quarterly and performing my job to the satisfaction of myself and others. Under the stress of this high-profile position my health remained strong. I was challenged by the blood sport we call politics but enjoyed solving community issues while being a part of a dynamic and concerned City Hall staff.

I tuned out my reality of seeing friends getting sick or hearing about another death at a local AIDS housing facility. That was, of course, until the day I could not lift my head off the pillow or drag my body out of bed. I knew there was something seriously wrong as I made the appointment to see my physician. Two weeks later I was lying in a bed at Cedars-Sinai Hospital.

I almost fell back as the digital scale blinked 139 pounds. “One-hundred and thirty-nine pounds,” I muttered, watching the overworked sometimes uncaring nurse’s assistant walk out of my room, not recognizing the power of these blinking numbers. Jesus, I thought, I haven’t seen that on any scale since sixth grade. My body began to shake and my mind started racing wildly. I’ve never been this sick, I’ve never been this skinny and I’ve never been this scared.

I had to laugh at the irony, hearing the television blare “chronic and manageable” while I watched my astute, well dressed and well mannered doctor walk down the hallway into my room. Noticing the seriousness in his eyes, I could not resist asking if “chronic and manageable” had any time limitations. He smiled and tried to reassure me I would get better. I was grateful for his confidence feeling certain it was my turn to die. How long could my body hold up fighting the immediate crisis of pneumonia, bacterial peritonitis, chronic hepatitis and ascites along with insulin dependent diabetes and HIV?

Eight weeks after my hospital stay, the scale read 158 pounds. “I survived this one,” I said to my usual nurse, uncertain as to how but unduly grateful for the understanding of my employer, the assistance of family and friends as well as an outpouring of concern from community residents and co-workers.

“Do you think HIV disease is chronic and manageable?” I asked her. “I guess it depends on who you ask and when,” she replied.

From personal experience I knew she was right.