Lesbian, Gay, Bisexual & Transgender Cancer Survivor Program OutWithCancer Network

No. 2: Seek and know the truth about your illness, and prognosis.
If you don’t have the facts, and don’t know the truth, you won’t make good
decisions. It takes courage to ask questions about statistics and your
prognosis.
One of ten tips from Hamilton Jordan, the former White House chief of staff for President Jimmy Carter, a well-known force in the health community. During the past 24 years he battled four different forms of cancer and urged cancer patients to empower themselves with information.

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No. 1: Be an active partner in the medical decisions that are made about
your life.
Don’t be passive. Learn about your disease, and participate in the decisions
that are made?.For example with my lymphoma, if I would have accepted the
first treatment offered, I’d be dead today. It was assumed that I only had a
mass in my chest. I later learned that the lymphoma was all through my body.

One of ten tips from Hamilton Jordan, the former White House chief of staff for President Jimmy Carter, a well-known force in the health community. During the past 24 years he battled four different forms of cancer and urged cancer patients to empower themselves with information.

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The LGBT Cancer Survivor Study is still active and seeking your participation.Lesbian, gay, bisexual and transgender cancer survivors are needed to participate in an internet study.  OutWithCancer is familiar with the work of these researchers and encourages your participation.  Please go to http://www.surveywriter.net/in/survey/survey807/CS.asp  and take part.

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Sometimes you just need an inspiration to get up in the morning.  Lesbian-feminist pioneer Barbara Hammer made a movie, A Horse Is Not a Metaphor,  while battling cancer and undergoing chemo treatment. 

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San Francisco, California-UCSF researchers recently launched a study to further evaluate the use of the Internet as a method to provide assistance to lesbian, gay, bisexual, and transgender (LGBT) smokers. Research indicates that the LGBT community has a higher rate of smoking than the general population. In some parts of the country, LGBT smoking rates can be as much as 50% higher than their heterosexual counterparts.

The study will evaluate LGBT-specific smoking treatment delivered by three methods: mail-based, Internet-based, and telephone-based. Participants will receive one of four treatments:

Mail-based Self-Help Treatment. Participants receive a manual to help them quit smoking. This manual provides information, recommendations, and tools to quit smoking. The manual includes information on smoking in the LGBTcommunity, information on smoking and HIV/AIDS, and information on smoking-related issues specific to LGBT individuals.

Internet-based Smoking Treatment. This treatment includes the self-help manual plus access to a website that provides the information and tools from the self-help manual described above. Participants also have access to a message board that will allow them to gain support and advice from other LGBT smokers as well as professionals from UCSF.

Phone Counseling Treatment. This treatment includes the self-help manual plus 6 counseling sessions conducted over the telephone. The counseling occurs during the first 3 months of participation and focuses on reviewing the information covered in the self help manual and providing support.

Internet plus Phone Counseling Treatment. This treatment includes the self-help manual, access to the internet-based treatment, and 6 telephone counseling sessions.

The study is a unique in offering participants cessation services that are highly convenient and private. To be eligible, individuals must be 18 years of age and identify as LGBT.

For further information about the study, visit  www.iquit.medschool.ucsf.edu.

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The Gay and Lesbian Medical Association and the Human Right’s Campaign released the 2008 Healthcare Equality Index, rating hospitals about their treatment of LGBT patients and healthcare professionals. 88 hospitals responded to our survey, answering questions about:

• Visitation and decision-making policies
• Nondiscrimination policies addressing sexual orientation and gender identity with respect to both patients and hospital employees
• LGBT-inclusive cultural competency or diversity training
• Domestic partnership benefits for hospital staff
  

We congratulate the 45 hospitals that got top marks (see below).

Hospital discrimination is a serious problem. Here are some real life examples that illustrate why it is so important that national nonprofits like the GLMA and the OutWithCancer LGBT Cancer Network are doing this work:

• In 2006, James Massey was rushed unconscious to Howard University Hospital in Washington, D.C. Kenneth Johnson, his partner, came to the hospital but was told that only “immediate family” could see the patient and that he was “just a friend.” Johnson had to drive 2-1/2 hours back and forth to his home in Virginia to fetch legal documents before the hospital allowed him to join in medical decision-making for Massey. Massey had suffered a cerebral hemorrhage and died the next day. The two men had registered as domestic partners in California and had an adopted son.

• In 2007, while on a family cruise leaving from Miami, Lisa Pond, a healthy 39 year-old, suddenly collapsed from a brain aneurysm. She was rushed to Miami’s Jackson Memorial Hospital with her partner of 18 years, Janice Langbehn, and three children following close behind. There, the hospital refused to accept information from Janice about her partner’s medical history. Janice was informed that she was in an antigay city and state, and she could expect to receive no information or acknowledgment as family. A doctor finally spoke with Janice, telling her that there was no chance of recovery. Other than one five minute visit, which was orchestrated by a Catholic priest at Janice’s request to perform last rites, and despite the doctor’s acknowledgment that no medical reason existed to prevent visitation, neither Janice nor her children were allowed to see Lisa until nearly eight hours after their arrival. Soon after Lisa’s death, Janice tried to get her death certificate in order to get life insurance and Social Security benefits for their children. She was denied both by the State of Florida and the Dade County Medical Examiner.

Click here to download the report

KAISER PERMANENTE
Anaheim Medical Center, Anaheim, CA
Baldwin Park Medical Center, Baldwin Park, CA
Bellflower Medical Center, Bellflower, CA
Fontana Medical Center, Fontana, CA
Fremont Medical Center, Fremont, CA
Fresno Medical Center, Fresno, CA
Hayward Medical Center, Hayward, CA
Manteca Medical Center, Manteca, CA
Moanalua Medical Center, Honolulu, HI
Mt. Diablo Medical Center, Concord, CA
Oakland Medical Center, Oakland, CA
Panorama City Medical Center, Panorama City, CA
Redwood City Medical Center, Redwood City, CA
Richmond Medical Center, Richmond, CA
Riverside Medical Center, Riverside, CA
Roseville Medical Center, Roseville, CA
S. San Francisco Medica l Center, S. San Francisco, CA
Sacramento Medical Center, Sacramento, CA
San Diego Medical Center, San Diego, CA
San Francisco Medical Center, San Francisco, CA
San Rafael Medical Center, San Rafael, CA
Santa Clara Medical Center (Kiely Campus), Santa Clara, CA
Santa Rosa Medical Center, Santa Rosa, CA
Santa Teresa Medical Center, San Jose, CA
South Bay Medical Center, Harbor City, CA
South Sacramento Medical Center, Sacramento, CA
Sunnyside Medical Center, Clackamas, OR
Vallejo Medical Center, Vallejo, CA
Walnut Creek Medical Center, Walnut Creek, CA
West Los Angeles Medical Center, Los Angeles, CA
Woodland Hills Medical Center, Woodland Hills,
CAPROMEDICA HEALTH SYSTEM
Bay Park Community Hospital, Oregon, OH
Bixby Medical Center, Adrian, MI
Defiance Regional Medical Center, Defiance, OH
Flower Hospital, Sylvania, OH
Fostoria Community Hospital, Fostori a, OH
Herrick Medical Center, Tecumseh, MI
Lima Memorial Health System, Lima, OH
The Toledo Hospital, Toledo, OH
Toledo Children’s Hospital, Toledo, OH
NO NETWORK
Advocate Illinois Masonic Medical Center, Chicago, IL
Los Angeles Medical Center, Los Angeles, CA
Massachusetts General Hospital, Boston, MA
Ohio State University Medical Center, Columbus, OH
UCSF Medical Center, San Francisco, CA

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“Of all the forms of inequality,” Martin Luther King Jr. once said, “injustice in health care is the most shocking and inhumane.” Cancer deaths are shamefully high among minorities and the poor because many lack access to life-saving prevention and treatment measures.
as quoted in May 13, 2008 Wall Street Journal, page A17, by Lance Armstrong.

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The Five Steps of Survival from a survivor of an Israeli land mine explosion, for us as cancer survivors.

1. Face Facts. One must first accept the harsh reality about suffering and loss, however brutal. “This terrible thing has happened. It can’t be changed. I can’t rewind the clock.  So now what?”

2. Choose Life. That is, “I want to say yes to the future. I want my life to go on in a positive way.” Seizing life, not surrendering to death or stagnation, requires letting go of resentments and looking forward, not back. It can be a daily decision.

3. Reach Out. One must find peers, friends, and family to break the isolation and loneliness that come in the aftermath of crisis. Seek empathy, not pity, from people who have been through something similar. Let the people in your life into your life. “It’s up to me to reach for someone’s hand.”

4. Get Moving. Sitting back gets you nowhere. One must get out of bed and out of the house to generate momentum. We have to take responsibility for our actions. “How do I want to live the rest of my life? What steps can I take today?”

5. Give Back. Thriving, not just surviving, requires the capacity to give again, through service and acts of kindness. “How can I be an asset to those around me, and not a drain? Will I ever feel grateful again?” Yes, and by sharing your experience and talents, you will inspire others to do the same.  
Please email your survivor stories to darryl@outwithcancer.com and we will post them here.

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