Tag: AIDS

General interest
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Things that matter

by Fran Johns

My daughter, having survived intact when her truck was totaled on Christmas Eve, mourned the absence of her pit/Great Pyrenees puppy, who took off when the truck flipped. Apple the dog apparently decided things might be calmer in the wilds of suburban Atlanta. (Flo the very old part-Lab, opted to stay put; a two-dog loss might have been too much for Mom.)

Apple’s disappearance was the bad news. Here’s the good news: the outpouring of support, in the form of e-mails, Facebook postings and offers from childhood friends who hadn’t been seen in years to go search local pounds was overwhelming. It gets REALLY hard to stay forlorn in the face of love and support from friends, family and people you never heard of who are offering comfort and help.

At Nancy Pelosi‘s annual January gathering there was another kind of support in evidence — and for me another reminder of the value of lasting friendship. I got a quick hug from my favorite star Democrat, California senator Mark Leno, who is often talked about as a potential successor to Pelosi. He gets my vote: Mark Leno is smart, level-headed, perceptive and impeccably ethical. (We could do with more politicians who’ve had rabbinical training.) He is also still graciously loyal to his life partner Doug Jackson, who died of AIDS decades ago in the early years of that grim time. Doug was the son of old friends of mine in Decatur, Georgia, so my affection for the good senator goes far beyond politics.

The bad news is that wars and sadness are everywhere. (Though Pelosi listed her priorities: jobs, safety — read: gun control, immigration reform and overturn Citizens United; that would spread joy.) The good news is that friendships are more powerful than all of the above. And if you hang onto them you can nearly always get a hug when you need one.

California/General interest/Health/USA/Women/World Affairs
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Jenna & Barbara Bush doing good? Building better global health? Believe it

by Fran Johns

Saying good things about anyone named Bush has not been a priority of this space. But an article by Sarah Adler that appeared in today’s San Francisco Chronicle, and a quick visit to the Global Health Corps Web site, suggest that the former first twins have found a way to turn their considerable name recognition and fund raising skills into an innovative program at work to improve health access and care in the U.S. and across the globe.

When first daughter Jenna Bush attended a Bay Area AIDS summit hosted by Google.org two years ago, some skeptics doubted it would amount to more than a photo op.

But they were wrong. In a conversation with a Google staffer and a Stanford AIDS activist at one session, she helped come up with a big idea: A plan to improve health care access in the poorest parts of the United States and the world. What may have seemed like a pie-in-the-sky plan has morphed into a nongovernmental organization with an impressive roster of donors and more than $1 million in funding. Few may have heard of the Global Health Corps, but as its influence grows, that is likely to change.

“So many ideas come up in group conversations that never get realized,” said corps founding director Dave Ryan, who at the time was the executive director for Face AIDS, a nonprofit group that helps Rwandans living with HIV. “But when we all got together, we saw there was something special that could happen.”

Having watched friends transition from college into careers through organizations like Teach for America, they wondered whether they could create a similar organization dedicated to health care.

“We felt like there should be a similar program for public health,” said Charlie Hale, who works in Google’s direct ad sales division and is one of the group’s co-founders.

They enlisted an eager group of socially conscious friends and secured $250,000 in seed money from Google.org. Jenna’s sister, Barbara Bush, became the president of the organization, after spending time working in Africa with UNICEF and the U.N. World Food Program.

Rather than plunging into provision of health care or supplies, GHC finds people with skills in supply chain, design and technology often learned outside of the health care field, and partners with public health organizations to fill such needs within the field. These tend not to be old fogeys over 30, either; it is twenty-somethings like themselves that GHC seeks to attract. They have thus far sent 22 fellows to 12 countries in East Africa and the U.S., and plan to send 36 new fellows out this year.

The organization has also formed partnerships with the Clinton HIV/AIDS Initiative, which is part of former President Bill Clinton’s global nongovernmental foundation, and Partners in Health, which was co-founded by Dr. Paul Farmer and has a large presence in Haiti.

The Global Health Corps has four staff members in New York and three volunteers in San Francisco and relies on group calls, e-mail and video conferencing at cafes, such as the recent session at Philz Coffee where Barbara Bush, Hale and Chief Financial Officer Jenny Miller exchanged updates.

The group has raised more than $1 million, and Hale said that while he’s aware that the group has more advantages than others, it also has a greater obligation to prove itself.

“Our contacts got us in the room, but at the end of the day, no one is going to significantly fund you unless you show that your good idea can work,” he said.

The Global Health Corps is accepting applications for fellowships in Burundi, Malawi, Tanzania and Rwanda, where Barbara Bush recently traveled to meet with the group’s fellows.

Boomers and beyonders need not apply. This is a new-grads generation thing. Working backwards from the Greatest Generation through the Depression-scarred and the super-achievers and the me-firsters and the whateverers, it is encouraging to see a new generation of energy and optimism deciding to take on global issues of real significance and need. Even if the decider is named Bush.

Opportunity, optimism in Global Health Corps.

California/General interest/Health/Lifestyle/Medicine/USA
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Medical marijuana benefits proven

by Fran Johns

Surprise. Medical marijuana really helps. What millions of us have known ever since friends with AIDS proved it more than a decade ago is now affirmed. San Francisco Chronicle writers Victoria Colliver and Wyatt Buchanan broke the news today:

The first U.S. clinical trials in more than 20 years on the medical efficacy of marijuana found that pot helps relieve pain and muscle spasms associated with multiple sclerosis and certain neurological conditions, according to a report released Wednesday by a UC research center.

Dr. Igor Grant, a UC San Diego psychiatrist who directs the center, called the report “good evidence” that marijuana would be an effective front-line treatment for neuropathy, a condition that can cause tingling, numbness and pain.

The results of five state-funded scientific clinical trials came 14 years after California voters passed a law approving marijuana for medical use and more than 10 years after the state Legislature passed a law that created the Center for Medicinal Cannabis Research at UC San Diego, which conducted the studies.

California’s Proposition 215, passed in 1996, allows patients with a valid doctor’s recommendation to grow and possess marijuana for personal medical use. It is one of 14 state laws legalizing medical marijuana. But the federal government still says pot is illegal and without medical benefit. Perhaps that may now change.

“This is the first step in approaching the (U.S. Food and Drug Administration), which has invested absolutely nothing in providing scientific data to resolve the debate,” said state Sen. Mark Leno, D-San Francisco, who noted that marijuana showed benefits throughout the AIDS epidemic in helping people afflicted with neuropathy and other ailments.

Dale Gieringer, a Berkeley resident who is executive director of the California branch of the National Organization for the Reform of Marijuana Laws, agreed.

“This is finally the evidence that shows that the (U.S. Drug Enforcement Administration) stance that marijuana does not have medical use is just wrong,” he said. “It’s time for the Obama administration to act.”

The bad news is that funding for research that could further confirm the potential medical benefits of marijuana may soon run out.

The Center for Medicinal Cannabis Research has approved 15 clinical studies, five of which were completed and reported Wednesday, and two are in progress. While researchers said more studies are needed, the future of the center is in doubt.

The center has spent all but $400,000 of the $8.9 million in research funding it started with in 1999. Leno said the state doesn’t have the money to continue funding it.

“It may be close to the end of its life unless there’s foundation money to continue the work,” Leno said.

If we could just combine the savings that could accrue from getting the feds out of the pot-prosecution business and the taxes that would accrue from legalization of medicinal use, a lot of that work could continue. And a lot of suffering could be alleviated.

California/General interest/Health/Lifestyle/Money/Politics & Causes/USA
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The aches & pains of medical marijuana

by Fran Johns

An article in Sunday’s New York Times details the struggle in Los Angeles to regulate the cannabis dispensaries which have proliferated around the  city over the past six or eight years, raising the old medical marijuana questions about how to control, whether to tax and how useful it is in the first place. Reporter Solomon Moore cites Oakland, California’s Harborside Health Center as the place to which many are looking for a model.

‘Our No. 1 task is to show that we are worthy of the public’s trust in asking to distribute medical cannabis in a safe and secure manner,’ said Steve DeAngelo, the pig-tailed proprietor of Harborside, which has been in business for three years.

Harborside is one of four licensed dispensaries in Oakland run as nonprofit organizations. It is the largest, with 74 employees and revenues of about $20 million. Last summer, the Oakland City Council passed an ordinance to collect taxes from the sale of marijuana, a measure that Mr. DeAngelo supported.

Mr. DeAngelo designed Harborside to exude legitimacy, security and comfort. Visitors to the low-slung building are greeted by security guards who check the required physicians’ recommendations. Inside, the dispensary looks like a bank, except that the floor is covered with hemp carpeting and the eight tellers stand behind identical displays of marijuana and hashish.

There is a laboratory where technicians determine the potency of the marijuana and label it accordingly. (Harborside says it rejects 80 percent of the marijuana that arrives at its door for insufficient quality.) There is even a bank vault where the day’s cash is stored along with reserves of premium cannabis. An armored truck picks up deposits every evening.

City officials routinely audit the dispensary’s books. Surplus cash is rolled back into the center to pay for free counseling sessions and yoga for patients. “Oakland issued licenses and regulations, and Los Angeles did nothing and they are still unregulated,” Mr. DeAngelo said. “Cannabis is being distributed by inappropriate people.”

I don’t know where Los Angeles will go with all this, or how well Harborside will continue to operate for how long. What I do know is that marijuana serves a real medical purpose. Probably serves a real recreational purpose too, and there’s the rub; but since I missed the pot party — thank heavens, as I am addicted to anything that comes down the pike, and please don’t try to tell me one cannot get addicted to marijuana — I can’t address that issue. Everything I know is anecdotal, but convincing.

Decades ago my beloved sister was suffering acute gastro intestinal distress, much later identified as a symptom of celiac disease but this was before anybody really knew anything about celiac sprue. One day she said, “You know, everybody at X High School either smokes pot or knows where to get it. Could you get me some so I could at least try it?” Well, even though the statute of limitations would probably protect the surviving players I think I won’t go into details of this adventure. But what I learned was: buying and selling illegal pot is a little scary for the novice, but the deal was easy and nobody went to jail. It did indeed give relief to my suffering sister. Though both of us wished she could have that relief on an ongoing basis, we reached a mutual conclusion that the risk was not worth the reward, and that was the end of that.

Fast forward to the 1990s, when everyone I knew with AIDS knew how marijuana could relieve some symptoms of the disease, and most had a supply. I was in San Francisco by then, and celiac disease pales in comparison to AIDS. I don’t even recall how legal it was for this relief; too many other issues were more important. But again, I saw its usefulness.

The Times article quotes Christine Gasparac, a spokeswoman for California Attorney General Jerry Brown, as saying his office is getting calls from law officials and advocates around the state asking for clarity on medical marijuana laws. I know that’s tough, and that the answer will in many cases be left to the courts. I also know that legalizing marijuana, whether here in woo-hoo California or elsewhere, raises a multiplicity of sticky issues.

But still. It’s a useful drug. If Big Pharma were producing and marketing it, it would probably come in a little pill that costs a fortune and would be covered by expensive insurance policies. Every governmental body in the U.S. needs money. Taxes raise money. Are there not some dots that could be connected here?

General interest/Lifestyle/Politics & Causes/USA
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Right time for gay rights?

by Fran Johns

President Obama, having repeated his promise to end “don’t ask, don”t tell” on Saturday, got an additional nudge from the National Equality March on Sunday. Tens of thousands of gay rights supporters from across the country poured through the streets of the nation’s capital to demand equal rights for LGBT citizens. They have their work cut out for them. With a few small, scattered gains having been made, there are battlegrounds shaping up everywhere from Maine to California over the issues highlighted by the events of this past weekend.

My friend Joe, who celebrated 35 years with his partner last summer, asked why I haven’t written about gay rights. Boomers and Beyonders, he says, have a unique perspective. “We have won a few battles that won’t have to be fought again, but there’s a long road ahead and the netroots now taking the lead need to have strong support from the veterans.”

So here goes.

While reiterating his promise to end “don’t ask, don’t tell,” Obama  gave no timetable for doing so. It’s time. Given everything else on his plate, those of us who support gay rights may be willing to cut the president a little slack, but this small step toward clearing some of the large injustices gays and lesbians have lived with since approximately forever is one Obama should be taking soon. 2010 sounds about right.

Other gay rights battlegrounds are active in Maine, where a ballot measure would repeal marriage rights for gays and lesbians, in Washington where a referendum must pass if full domestic partnership benefits are retained, and elsewhere. Meanwhile, according to Change.org, the U.S. Conference of Catholic Bishops “is planning a major statement on marriage in November, preparing to issue new language about how the church views same-sex marriage. Unfortunately, the new language is more of the same… hateful, tired and representative of a theology that views people who are LGBT as less than.”

Compared to the record of togetherness set by Joe and Robert, my marital history is pretty lousy. (Up until this, my final marriage, that is, and its extraordinarily happy 17 years.) So it is hard to see my marital state being threatened by theirs being legitimized. Joe and I were also part of an AIDS support group during the 1990s, and witnessed tragic injustices suffered by dying young men whose hospital doors were barred to those who loved them best. A lot more needs changing than just “don’t ask, don’t tell.”

Senate Armed Services Committee Chairman Carl Levin (D-Michigan) was quoted by Elizabeth Williamson and Neil King in Monday’s Wall Street Journal as saying it was “now possible ‘to get a buy-in from the military’ to end a policy opposed by gays and many liberals since it was passed by Congress in 1993.” The monumental pile of global problems to be solved may keep Obama from seizing this good opportunity; gay rights supporters could keep that door open until he does act.

Global issues aside, one home front fact remains: LGBT Americans have been unjustly treated in innumerable ways, for innumerable years.

Getting rid of “don’t ask, don’t tell” seems a very good way to start putting things right.

General interest
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A Story of AIDS & Living Well

by Fran Johns

As he lay dying of AIDS, my friend Michael gazed over my head in the general direction of the bathroom, managed an almost-chuckle and said, “Nahh, not yet.” This was in 1995, on a foggy gray day in San Francisco, before the discovery of protease inhibitors that would alter the course of the disease. Michael and I had sat together at a dozen similar bedsides as members of the same AIDS support group, but he knew the scene far better than I.

Michael’s sister was due in from the east coast that day. In the bathroom medicine chest were the drugs he knew could end his life in hours rather than in the days or weeks he might have left. Michael’s body had grown frail, but his mind and spirit still soared.

AIDS is a terrible way to die. So are any number of other debilitating illnesses. But many of us believe that honest discussion of prognosis, possible treatments and options are not just empowering, but sane. There is a lot of insanity loose in the land.

A study to be published in the August 15 issue of the American Journal of Respiratory and Critical Care Medicine suggests that many surrogate decision-makers actually don’t want doctors to tell them about options and potential outcomes. I say, OK, fine; don’t ask.

But for someone critically ill who wants to know, why shouldn’t physicians be allowed to tell the truth? How likely am I to regain any quality of life? While my bad cells are being destroyed, what other destruction will happen? What if I choose no treatment at all?

Throughout decades of volunteer work with hospice, AIDS and most recently Compassion and Choices (counsel and support for terminally ill, mentally competent adults) 99% of the critically ill adults I have encountered have gained both power and peace from knowing their choices. They could tell you: it is not about death, it’s about living. Dying is going to happen. Living well takes effort.

In the 1990s almost everyone I knew who had AIDS also had a stash of drugs that could bring his life to a swift end. Very few of them used those drugs. Check the Oregon statistics: far more people request life-ending drugs than ever actually use them.

It’s about safety valves. It’s about  personal choice. It’s about control of one’s own life. It’s about living well.

For anyone to oppose the piece of our complicated health reform that provides coverage for critically ill (and other) individuals to gain understanding of their conditions is irrational and unreasonable. If those opponents choose to keep their heads in the sand that’s fine with me; but why deny the rest of us the right to reason?

Michael died that night, without opening the medicine chest. He could have told you he’d had enough. He would have told you that knowing the means to end his suffering was available had given him great strength and a degree of peace for over a year. He would have told you that straight talk from his physician (who also died of AIDS a few years later) empowered and emboldened him in a remarkable battle for life.

It was never about dying; it was about living well.