Since the very earliest days of the AIDS epidemic—when she founded what was one of the very first support groups for living with HIV—Lark Lands has been a generous and caring expert resource. Through the support groups she taught people how to support their bodies with good nutrition and an integrated approach to health in the hope that this would help maintain the immune system and overall body health. The goals: to give people a chance to survive until effective drugs became available and, perhaps just as important, to give hope. Many of those support group members are alive today. And years later, clinical trials confirmed the value of her approach. She was also the first to observe that nutrient deficiencies were common and contributing to terrible symptoms like fatigue and diarrhea and neuropathy and countless others, for all of which she found combined approaches that helped.
She helped many thousands of people, both directly and through her lectures and writing. And that number more likely extends to millions worldwide -- many activists through the years contacted her to let her know how much her work had helped even in isolated villages in Africa and Asia. For many years she traveled to give up to 40 speeches per year in 40 different cities in the U.S. and abroad, teaching people how to support their bodies while also updating them on antiretrovirals and treatments for opportunistic infections and wasting. Many people attribute their survival, or a significant share of it, to Lark’s expertise and guidance.
Sadly, Lark is now struggling with Stage 4 metastatic cancer that has spread to her lungs; it has no good treatment options; it came on rapidly and has worsened. She is now on oxygen full-time, unable to be off it for even a minute. But she remains cheerful. In an email to friends to tell them this on July 19, in typical Lark fashion, she wrote:
“Please know that, other than having to figure out everything I have to do to close things out and how I will find the energy to do so, I'm fine. I am content with my life and the only thing that terrified me, finding a home with a loving person for my beloved cat Ali'i was taken care of a couple of days ago. So I will stick around as long as I can for this 21-year-old kitty who loves me so but now I know he will be well taken care of and I feel so happy and so relieved.”
Lark says some people don’t understand why she is taking such a terrible diagnosis so calmly. But she notes that when it comes to death, she was “broken” long ago. Because of the thousands of friends she lost, Lark, like many of us, eventually quit grieving at all because “you can't grieve terribly eight times a week.” And she notes, “It appears that this applies when it's me, as well.” But that doesn’t mean Lark has given up. She added:
“The only thing I'm really interested in is oncolytic viruses to treat cancer. The research is showing amazing results at top cancer research centers. People with other "incurable" cancers have been cured. So there's always hope. She concluded her email to friends with “So sorry that I have to tell you this. I know you love me and this will make you sad. Just know that I'm fine, emotionally and mentally, if not physically. Love you much. –Lark”
Lark has told everyone how lucky she is that two of her activist friends, George Carter and John Riley, followed up on her idea about oncolytic viruses and located a trial that looks very promising. The fact that she appears to qualify for it has given her great hope and—it appears—more energy to go through the struggles ahead.
Lark is a very private person who was reluctant to allow us to establish this GoFundMe page, soliciting funds for her. But we argued that she had given the HIV community so much for so many years that she needed to now let us do something for her.
And Lark needs our help. Most of what Lark did working with people living with HIV and with the AIDS orphans project she cofounded in South Africa was done on her own, without a salary and largely uncompensated through much of 30 years. As a result she has no savings or retirement fund or investments to cash in. She still works as a medical editor, basically living hand to mouth every month. Thus, she doesn’t have the financial resources to deal with what she is facing.
One of her most immediate needs is for a portable oxygen concentrator (POC) to replace the heavy oxygen tanks needed when away from home which don’t last long at the high level of oxygen she needs. And only the POC is allowed on planes so if she gets in the trial (halfway across the country!), she will have to have one. One that meets her needs will cost around $3,000-$3,500. The only oxygen supplier where she lives just told her that they could not provide a POC through Medicare (real reason: because the oxygen companies don’t make enough money on them!). So buying her own is urgently needed.
All of us know that the costs—expected and unexpected—for battling a life-threatening condition are enormous and often overwhelming. Not to mention that none of the nutritional therapies she uses are covered by Medicare. And if she is admitted to the clinical trial she will incur significant travel and lodging costs for repeated trips there. Helping pay for all these expenses is why we started this GoFundMe, to raise funds first to pay for the portable oxygen concentrator, but also for other expenses that she has already incurred, and for others that are sure to arise.
If you are able to donate, at any level, we would be grateful. Your thoughts, prayers, healing energy or whatever you have to offer are welcomed. Sean Strub recently wrote this to Lark: “Perhaps most important, your kindness, patience and hope were always infectious…No matter how dire the situation, no matter how few options seemed available, you always gave me and others hope, and a science-based strategy that kept many people going when they might have otherwise given up.”
Let’s give hope, and funds to support it, back to this hero who gave so much for so long.
Fred Blair, acupuncturist, Blue Lotus Acupuncture NYC
George M. Carter, Founder & Director, Foundation for Integrative AIDS Research (FIAR)
Gregg Cassin, Cofounder, AIDS, Medicine & Miracles
Mary Caston, Counselor, Colorado AIDS Project & Monterey County AIDS Project; Board of Directors, AIDS Medicine & Miracles
JD Davids, Senior Editor and Director of Partnerships, TheBody.com/ TheBodyPRO.com
Michael Dorosh, Treatment Education Network, AIDS Treatment Activists Coalition (ATAC)
John James, Editor and Publisher, AIDS Treatment News
Gil Kudrin, Cofounder, Night Sweats & T Cells
Bob Lederer, former POZ editor, ACT UP/NY member, DAAIR board chair
Michael Mooney, Founder, DocMooney.com
John Riley, ACT UP/NY member, Out-FM radio producer
Fred Schaich, Founder, International Foundation for Alternative Research in AIDS
Jane Shull, Executive Director, Philadelphia FIGHT
Sean Strub, Founder, POZ and Sero Project
Enid Vazquez, Associate Editor, Positively Aware
Nelson Vergel, Founder, Body Positive Wellness Center/Houston, Program For Wellness Restoration (PoWeR)
Fred Walters, Founder, Houston Buyers Club
- Becky Jones
- David Dorfman
- robert moore
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