From the the week August 29 - September 5, 1997:
The question:
I do have a couple of things I'd like you to clarify: Can you describe in more detail, the ceremonies called Family Reunion, Gathering, Uncles' Party, etc?As I now understand it, these are more than mere 'picnics' where family members and friends get together to eat and enjoy each others company. But rather, there is more than one event planned around several days, with the Uncles' Party being the main event. No?
Wes' response:
Well, the Uncles' Party is a family reunion of sorts. It is a party put on by (you guessed it) the uncles -- for their nephews and nieces. But -- be forewarned -- my family has lots of practical jokesters in it. The first Uncles' Party about 20 years ago was such an affair.For example, my uncle Willie walked around the entire week before rattling change in his pocket. Then one of the events at the Uncles' Party turned out to be a cash grab. There was a metal garbage lid on the lawn filled with money underneath. When the lid was lifted, the kids gathered around could keep whatever they got. All the kids were anxiously positioning themselves around the lid as the countdown began. 10-9-8-7-6-5-4-3-2-1...the lid came up and the kids dove in...to a pile of manure.
At the next Uncles' Party (where I was an Uncle-in-Training), the next batch of young kids (the sons & daughters of my oldest cousins) was taken to the side of the farm house where the party was being held. All the adults were gathered in chairs on the front lawn under the trees. One at a time the kids would be brought around the house with a blindfold on. It was time to play Touch the Cow.
My father, a big lumbering man, would stomp his feet and resonate a deep "Moooooo!" in his cupped hands. The child would be told that someone was bringing one of the cows over. When the "cow" was in place, the kid would be told to reach forward and touch the cow's ear. A tentative hand would come forward and an aunt would let the finger touch a furry slipper. Then the kid was told to touch the cow's tongue. This was always done with more trepidation. Another aunt would let the finger touch the "rough" side of a damp washcloth. Then everyone gathered around would say "Turn the cow around! Turn the cow around!" My father would boom the ground with his feet and some commotion would go on. Then the kid would be told "Now touch the cow's tail." Again, a tentative finger would be proffered. "A little further." Then, when the kid was sure he/she was close, one aunt would jab a coffee-mug full of chocolate pudding onto the finger just as another aunt would yank off the blindfold and just as everyone yells "Oooooh! The cow moved his tail!" The suddenness of it all would have the kid seeing a chocolate pudding-covered finger, thinking he'd just touched a cow's butthole.
It really is twisted, and also funny as hell.
>: )
Maybe it was a precursor to why on earth I'd post "Things from Wes' Nose"
From the the week August 22 - 29, 1997:
From the the week August 15 - 22, 1997:
Well, we moved two weeks ago into our home and it's amazing. Once the building was finished it was used as the site for a designer showcase called Interiors. Interiors is a major fundraiser of the orchestra here in London. So what had been a drab, institutional type facility (what the government provided) turned into a gracious, lovely home. Each apartment is decorated differently. There is hardwood flooring throughout. Every room has amazing paint finishes. The large room where I reside and which is also our Communications room with meds, charts, etc. is painted with aboriginal figures dancing across the walls. Kokpelli is over the door and I have the turtle, the bear, sacred spiral and the four directions to name a few in my space. Makes for a spiritual anchor in the busyness of the day. Our common room is beautiful with a gas fireplace that has wonderful stone all around it. There is a common kitchen, fully functional, three appliances (more than I have at home). Each kitchen in the apartments was upgraded as well. So one has a Mediteranean blue tile countertop and another has the latest in moulded counter tops. Each apartment has a pass through from the bedroom to the living room. So when someone is bedridden they can see the rest of their apartment. The designers treated this pass through differently in each case. Some put louvred wood blinds. Some installed leaded glass panes. So each apartment is unique.Then she added a tidbit that made Wes do a Happy Dance:
I'm part of a group organizing a camp for HIV+ people and their families of choice. So we go to camp on the 24th. I've been corresponding with Melissa, thanks to your website link, about her experiences at camp.
From the the week August 8 - 15, 1997:
From the the week August 1 - 8, 1997:
From the two weeks July 18 - August 1, 1997:
From the week July 11 - 18, 1997:
"Fighting HIV"
Thursday, July 24th, 1997
"A Houston Community Forum"
5:00 p.m. to 8:00 p.m.
(Buffet dinner served at 5:00 p.m.)
at The Center for AIDS, 1407 Hawthorne St.
Speakers:
Roy "Trip" Gulick, M.D.,
Instructor of Medicine at New York University School of Medicine and Investigator, NYU HIV Clinical TrialsShannon Schrader, M.D.,
Medical Director of Houston Clinical Research NetworkTopics:
- Treatment Regimens -- Where to Begin
- Treatment Options for the Heavily-Treated Patient
- Resistance and Cross-Resistance
- Adherence and Compliance Issues
Sponsored by the Center for AIDS and AVES.
Please call 713-527-8219 or 713-626-1588 for more information.
From the week July 4 - 11, 1997:
Another week with lots of new stuff:"We believe that the characterization of religion as inherently conservative, and the subsequent portrayal of social debates as disagreements between the religious and the areligious undermine faith in religious institutions and the ideal of religious diversity.
Our mission is to inform the public of the diversity of religious opinion on social issues where it is not widely recognized by providing a voice and a forum for religious organizations, congregations and clergy in the Philadelphia area who support gay rights, reproductive freedom, and the separation of church and state."
(The suggestion for this link, and for Bible Gateway, below, came to us from Chris Purdom, who has his own interesting site. We particularly liked the link in his Movie section that lists all the credits for films.)
From the week June 27 - July 4, 1997:
June 24, 1997
In the last year, activists have worked to demand wide access to Glaxo Wellcome's 1592, a promising new antiviral which may be needed by people failing other therapies. After months of advocacy and negotiations, Glaxo has finally announced that it will shortly launch a compassionate use program for the drug. However, the first stage of the program will only allow for 5,000 slots worldwide over the next six months, registering only 200 new people per week. 1592 is the only new drug likely to become available in the near future for those who have failed available combinations with protease inhibitors. In preliminary testing, 1592 appears to be reasonably safe and highly potent. A second larger program of expanded access is under development for the first half of 1998, but this may come too late to help those with the most immediate need.
The 1592 Access Coalition, a group of treatment advocates nationwide, has announced a campaign to demand that Glaxo Wellcome increase the size of its compassionate use program to meet the actual demand for the drug and file for accelerated FDA approval for the drug no later than March, 1998. Please join this effort to make 1592 available to those who have run out of options!
Action Needed:
- Write and call Robert Ingram, CEO of Glaxo Wellcome. Urge Glaxo to increase its compassionate use program for 1592 to meet the need of all who are qualified, and to accelerate their plans for submitting data for an FDA approval. Also ask Glaxo to file for accelerated approval for 1592 no later than March, 1998.
- Write your physician and ask him/her to communicate the same message to their Glaxo Wellcome sales representatives. Enclosed are sample letters to help craft your message. Please remember to send us copies of your letters and any responses you may receive.
- Copy this Alert and distribute widely to family, friends, co-workers and other advocates.
- Many activists are calling for a boycott of some Glaxo products. For more information about the boycott, contact Jeff Getty at (510) 653-6099.
Contact information:
Robert Ingram
CEO
Glaxo Wellcome
5 Moore Dr.
Research Triangle Park, NC 27709
(919) 248-2100Background information:
Glaxo Wellcome's 1592 is a nucleoside analogue drug (similar to AZT) that has recently raised great interest in the AIDS community. Initial study results demonstrate that this treatment has significant potential as a replacement for the current drugs of the same class, like AZT and ddI. 1592 has been shown to cross the blood-brain barrier, suggesting that the drug may play a role in the prevention and treatment of HIV-related dementia.The most important feature of 1592 is that it is new and therefore may be needed by people who can not find two new drugs when changing to a new combination. Two new drugs are necessary for optimal results. Many others simply have no drugs left which work for them.
Advocates are pressuring Glaxo Wellcome and the FDA to allow the earliest possible access to this drug for those who have no other therapy options or who lack new drugs to begin combination therapy. Glaxo Wellcome is planning to launch a compassionate use program (a mechanism to provide treatment in development free of charge to people who meet certain eligibility requirements). However, this program will only have 5,000 slots to meet the demand worldwide. While no one knows what the size of the real need is, it may easily exceed this number.
Glaxo Wellcome currently plans to file for FDA approval in mid-1998. This may be too late for many people. It is critical that they do everything possible to hasten this timetable and be prepared to supply the drug for a large scale expanded access program in the first half of 1998 to cover the gap while awaiting FDA approval. The message to Glaxo Wellcome must be loud and clear: make this drug available, as soon as possible, for those people who have exhausted current therapies and lack sufficient elements for an effective combination therapy strategy. Glaxo Wellcome should know that cooperation with the community is essential in the drug development process.
For more information about 1592, call Project Inform's National HIV/AIDS Treatment Hotline at 1-800-822-7422.
Sample letter to Glaxo-Wellcome
Mr. Robert Ingram
Chief Executive Officer
5 Moore Drive
Research Triangle, NC 27709
re: Development of 1592
Dear Mr. Ingram,
I am writing to urge you to do everything in your power to provide immediate access to 1592 for all those in need. Glaxo Wellcome's 1592 compassionate use program, even for 5,000 people, may prove to be inadequate. [MD8]
{Insert personal story here. If you or someone you know may need access to 1592, discuss that here.}
In addition to increasing the size of your compassionate use program, I am also asking you to make sure that the larger expanded access program for 1592 start at the earliest possible date in 1997 and that you file for accelerated approval of 1592 as soon as this is feasible, ideally no later than March, 1998.
As you well know, 1592 provides hope for many people living with HIV/AIDS who have failed on all available combination therapies or who lack an unused companion drug need to make an effective combination therapy. It would be inhumane for Glaxo to limit access to this treatment.
I look forward to receiving your response to my concerns.
Sincerely,
Your name
Sample letter for physicians
Dear Physician,I believe that Glaxo Wellcome is not doing all it can to provide access to a promising new HIV antiviral, 1592, and I need your help to change this situation and increase access to effective therapies for people with HIV and AIDS.
1592 has been in small clinical trials since 1995. Data obtained so far shows that the drug is many times more active than currently approved NRTI drugs, with fewer side effects. Some trial participants have shown turnarounds every bit as dramatic as seen with protease inhibitors.
In spite of this promising data, Glaxo has repeatedly delayed further trials and is not planning to apply for FDA approval until mid-1998. After much delay, Glaxo has offered a compassionate use program for only 5,000 people worldwide. While we cannot pretend to know the size of the need for immediate access to this drug, there is every reason to believe it may exceed the 5000 slots announced worldwide.
I believe Glaxo Wellcome should implement a compassionate use program which truly meets the needs of people with HIV/AIDS and do whatever it takes to make 1592 available to all who need it now. This is where we need your help.
I am asking you to let the Glaxo Wellcome sales representatives know that you believe the delay in making 1592 available and the inadequate compassionate use program is unacceptable.
With your help, we can turn this situation around. Thank you for your time and consideration.
Sincerely,
Your name
From the week June 20 - 27, 1997:
Washington, DC---June 18, 1997---The National Gay and Lesbian Task Force today said that this morning's decision by members of the Southern Baptist Convention to boycott Disney will mean that the Magic Kingdom will become the tragic kingdom. The religious organization announced yesterday that it would urge its 15.7 million members to boycott Disney theme parks and all other Disney products because of the company's "gay- friendly" policies.
The nation's largest Protestant denomination warned the Disney company a year ago that it had 12 months to change its policies and programming toward one that celebrates more traditional family values. The Southern Baptist Convention specifically opposed Disney's "Gay Days," the extension of health benefits to partners of gay employees and the recent coming out episode of "Ellen" on Disney-owned ABC television.
In a nationally televised news interview yesterday, Kerry Lobel, executive director of NGLTF told Reverend Richard Land, president of the Convention's Christian Life Commission that "Disney is modeling good citizenship and good citizenry through its policies. Walt Disney and his characters taught us that it's a small world after all, where every person is welcome."
Southern Baptist Convention members met today in Dallas and voted to boycott the Disney company. "I had hoped they would vote for America's children to have a safe-haven free from politics, fear and ignorance," Lobel said. "They can keep their children from Disneyland and Disney World, but they can't keep Disney characters from the hearts and minds of children. Characters like Dumbo, Pinocchio and Tigger have taught us that there is a welcoming family for every child and the Disney company's policies have demonstrated that this is the case."
---------
TAKE ACTION:
Thank Disney for their support of equality for all!
Michael Eisner
Chief Executive Officer
Walt Disney Company
500 South Buena Vista Street
Burbank, CA 91521-1010
Feedback line: 818-560-2413
WWW feedback via http://www.disney.com/mail
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