I have bigger thoughts (spurred on by my doctor who was at the forefront of HIV/AIDS care in the 80s….. ) I have a family member living with HIV, and friends….and of course I spent some years in SF where the ghosts of the beautiful people we’ve lost still hangs heavy in the air.

I wish there was a better class analysis around these discussions – there are reasons why sub-saharan Africa has been so hard hit – and reasons why your life expectancy and quality of life being an HIV + or AIDS patient in the U.S. completely depends on your economic ability to purchase medications and treatment. As well as people’s access to information about self-protection.

I also want to point out that 200,000 people are contracting Lyme Disease in this country every year. And that despite knowing about this disease for well over 100 years we have still not managed to develop an accurate test for this it and Americans hear more about H1NI than they ever do about Lyme.

As a Late Stage Lyme patient who also has the co-infections of babesia (a malarial infection,) and bartonella, and someone who has been misdiagnosed for 15 years (told I was a “woman” a “depressed woman” a “molested woman” and I should expect to be in pain because of those things – for 15 damn years…) I cannot help but see parallels between these horrendous diseases and other diseases that kill people needlessly on a daily basis.

I have violent seizures almost nightly – cannot walk some days – have lost 90lbs due to wasting from the disease – and can’t remember words, numbers or even where I am when I wake up some mornings. That’s pretty much a writer’s worst nightmare – I can’t remember words. There are scads of other symptoms but the fact is the government, pressured by the insurance lobby’s and big pharmaceutical companies, is doing nothing to educate the public about this disease – in fact I recently found out that lyme patients can donate blood no problem (we still don’t know if the disease can be passed sexually or via blood,) so we are letting it seep into our blood supply. And despite what people have heard we are still dying from this disease – eventually it can paralyze us – it’s a nightmare. (And no you can’t donate blood if you’ve had safe sex with a completely healthy gay man- but you can donate blood if you have a raging bacterial infection in your brain and heart which steals your life….absurd and insulting.)

And the only Lyme test available to most people in the country has a 60% error rate. (I write a lot about this on my lj – or my web site – helphealfran.org – there’s a brief video there that provides a pretty good over-view. If you feel like taking a look you should jump over there and poke around a bit – which I encourage you to do because I contracted Lyme in NY…..I lived about 2 hrs North of the city – but we now know lyme carrying ticks can live on mice and vermin who come into our homes and birds – and yes, even NYC dwellers are at risk.

We lost so many of our people because of AIDS – because it was considered a gay disease and therefore not important – but we also had the amazing organizational skills and righteous anger of the gay community to organize and protest for better treatment – and in many ways that worked very well. Look at how far we have come – it’s amazing and beautiful – we still have a long way to go – but look how far.

There is nothing particular connecting late stage lyme patients except for the disease (we are all ages, races, socio-economic groups, we live all over the country and in Canada and Europe)- so far we have not been able to mobilize much of a political presence to counter-act the lying bastards in the insurance and big pharma fields.

My doctor always sighs and says: this reminds me exactly of what I was dealing with with my HIV patients 25 years ago.

He says he has checked every venue and there is no assistance available to me to help pay for my $500 – $1500 monthly medication bills alone because I have Lyme. He says: “If you had HIV or Hep C we could get you all of these drugs for free, but there is not help available to you because you have Lyme.” I fund raise for my care – and when the money runs out I have to stop receiving treatment – and that is not the best way to treat this intelligent and aggressive disease which resides in my brain and my heart.

I honor and remember all of our dead brothers and sisters and fantastically alternatively gendered people who we have lost – who we keep losing because of AIDs.

200,000 new lyme cases per year x how many years now….that equals an epidemic. I’ve heard the greatest experts in the field refer to Lyme as “the next great medical tsunami.” And people need to know more about this disease to protect themselves and their loved ones.

Can you imagine if the HIV test had a 60% error rate? How horrendous that would be. It would be inexcusable! It is inexcusable that in nearly 30 years since the we came to know that Lyme exists in a major way not one scientist or doctor has come up with a reliable test for this disease.

Poor people with both HIV/AIDs and Late Stage Lyme are still suffering needlessly because of idiotic things like profit margins. I worked in health care for over a decade – low income hospitals and clinics – trying to obtain health care for people who had not other options. Now I find myself in the same place – unemployed due to illness, no insurance – I fund raise for my health care but my friends are all beautiful, broke queer artists and activists…(not all, but most.) And when the funds run out I have to stop receiving treatment – and when I can’t afford treatment I lose a little more of my body and my brain function every day.

I want us to remember how hard we fought and how hard the people who came before us fought to get HIV/AIDS patients taken seriously and cared for. And I want the same standards of treatment for everyone in the world suffering from this and other disease.s

And I also want people to start educating themselves about Lyme disease….with 200,000 new cases yearly (a conservative estimate,) we really should be receiving more information about how to prevent this disease from destroying our lives. It’s too late for me – I will never be cured. If I could afford proper treatment I might be able to regain about 70-80% of my “normal” life back. Maybe.

People in developing countries-and people who live on the margins of society in the US need help desperately- not just one day a year.

We need to be thinking about the health and welfare of all people globally – it is not a luxury merely for the rich or the insured middle-class – it is a necessity for all people regardless of where they live or what their income level is.

Over a million people die every year from malaria – and 350-500 million people are living with the disease right now.

Around 6000 children under the age of 5 die per day from diarrhea – that’s about 2.2 million dead babies annually.

I know this is long- and may seem off-topic – but HIV/AIDs, Lyme, Malaria, Diarrhea and a host of other preventable, treatable (with early and proper action,) diseases are killing the working-poor of the world every day – and that should be something we think about every day.

I miss the people I never got the chance to know because AIDS took them far too young.

I worry about my 27 year old HIV + family member and her beautiful son every day.

And every day I wake up in pain and go to sleep in pain – nearly intolerable pain – and I wonder if this is the day people are going to wake up from whatever blackberry/twitter/facebook/livejournal/lolcatz coma they’ve induced for themselves and get really serious about raising their voices so loud the government – hell, all governments – finally take us seriously enough to listen and to ACT.

Whew! That was long. If you’ve read this far congratulations. :)

And sincerely – thank you for posting this. It is important and necessary.

Ps: As a smut writer your only job is to write amazing smut. Working safe sex into a story only works if the story requires it. It is the job of sex and public health educators to teach people about safe sex – it is the job of writers to write the best stories/poems/essays they can. Hemingway trusted his audience enough to leave enough room for them to interpret his writing many different ways-and to engage their minds fully when reading his work.

If the safe sex is part of the hotness of your story that will come through – but if your story doesn’t call for that I think it’s ok to omit it and trust your readers to know that you are smart enough to do the right thing. The great thing about smut and fantasy is that it is the best birth control and disease preventative in the world….., just my extremely long 2 cent.)

Please say hello to the every lovley Kristin for me. And thank you again for this post. xoxo

but also – i feel like you skipped something that everyone skips talking about aids – the discussion always seems to go from the queer past to the african current, missing out entirely on the fairly stark increases in hiv/aids cases in non-queer parts of the u.s. over the last few years.