here is the response i posted (tidied for typos) to the discussion thread on the aidsmeds site hosted by jonathan, who also hosts his own hiv blog on the aidsmeds site:

friday, july 29

i am updating this page with an anthology of the responses on the thread comparing hiv and diabetes. read the entire thing. i am hoping discussion will continue

Monday July 25, 2005 10:41 AM

Has anyone thought that we are bringing about our own funding issues and problems? Has anyone thought that by our own actions and in some cases beliefs that we are the ones short-changing the resources available.

Think for a min, from what I see here, and hear many people say that being HIV + is a manageable condition like diabetes. Where the hell did anyone get this from? And why do you choose to believe this?

This disease is still 100% fatal unlike diabetes. I am using diabetes since it is the most often condition people compare HIV to. So you have convinced yourself and others that this is not really all that serious anymore, due to the new meds and treatments.

How fast you and everyone forget all the side effects....I never once saw either of my parents develop a hump from thier insulin. Or get 1 of the so seeminglingly hundred of possible life altering side effects we suffer through from the potent chemotherapy we deal with just to survive.

We need to stop the madness and really refocus on the seriousness of disease and move back to the idea of it being 100% fatal. As well as correct the mis-education policy stance taken up by many people.

Just maybe, and I mean maybe if we each correct anyone who says this very incorrect things, people will get back to the idea of this being a deadly disease, with many side effects and issue with out even taking meds, and compounded by the meds we are require to take so it suddenly becomes a manageable condition.

It is a livable condition and that is all.

TRai

Monday July 25, 2005 11:23 AM

I think in the rush to embrace the new life-saving medical treatment, and in the well-intentioned attempt to make people who are infected feel less terrified, doctors and HIV counselors downplay the terminal aspect of HIv disease. The downplay the side effects and the impact of a very difficult regimen that the "life-saving" treatments have to offer. In the misguided attempt to quell despair, we have created the illusion of an easily managed non-impactful disease - an illusion embraced by many HIV negative people who were born/came of age in the days after the horror of pre-therapy AIDS. So, of course, people are getting new infections. And the drug companies are playing into that full-force, with full-page ads showing healthy and beauitiful men mountain climbing, surfing, camping, and cheerfully showing their tanned, unlined faces towards a shiny future.... all thanks to these drugs. You can't blame them for showing the best possible side of their therapies (and we have to face it, for a number of the people on these drugs, this is indeed their experience).

This board tend to swing back and forth, from downplaying the seriousness of the disease to the point of blaming those who are sick for A) being sick and B) being a downer, to dwelling on the illness to the point of resenting those for whom the drug therapies work optimally, or for whom the virus has yet to make a significant impact. I suspect that somewhere near the middle there is indeed common ground.

jonathan

Monday July 25, 2005 12:11 PM

I agree with Jonathan. No one interested in marketing hope wants to hear about troubles. They make lousy press.

Anyone who thinks that a long-term survival strategy depends solely on taking one's meds and thinking pleasant thoughts is kidding themselves. We each have our own unique battle with the virus and so far some have been luckier than others. I have bitched too often about the shredded heap of my career to repeat it again. But it's a simple fact that HIV has complicated my life in ways I could never have imagined when first diagnosed. The challenges managing my health are at least as formidable as any difficulties I've experienced yet from the actual virus (beyond side-effects).

I think that it is entirely reasonable to insist that optimism is required for survival. If you aspire to better things, they may come. But negativity is the skunk at the picnic, and I honestly can't blame anyone for turning off my reality when theirs is so much better in comparison. The swamp's not as far away as they might think, but I understand their reticence in looking down too closely

I hope that my challenges are never faced by them. I sincerely wish that their relationships stay strong, their insurance easy and affordable, their careers continue upwardly. I hope that they are met with compassion and professionalism by all their medical providers, and that those vital relationships endure.

I am neither envious of those with better current circumstances nor do I wish to drag them down. But I reserve the right to work things out here in these forums just like everybody else. Support is support for everybody.

Peace-
Brent

Tuesday July 26, 2005 9:33 PM

What a contest! Deadly infectious disease, or deadly metabolic disease? I'm an AIDS doctor and I had 2 daughters, one with AIDS and one with insulin-dependent diabetes. During a horrifying 10 month hospitalization for TB (lung, gut) when she had a lung removed, etc., #1 daughter was diagnosed at 16 with HIV. She was able to tolerate her first HAART regimen (all of 3 pills a day, Combivir and Sustiva) without any serious side effects (definitely an exception), was undetectable and with a CD4 count >400 when she died in a car crash (rear-ended by some creep that was speeding). She did have nightmares for the first few weeks of Sustiva, but that went away. Sometimes she cheated on her pills, she would just forget, but she did not seem to ever develop resistance; for more than 4 years, she remained undetectable, with high CD4s. #2 daughter was diagnosed with insulin dependent (juvenile) diabetes at age 11. She has since needed at least 3-4 shots a day to be able to keep her blood sugar in the neighborhood of normal. She has to check her blood at least 4 times a day, and get a blood test to monitor long-term control every 3 months (hemoglobin A1C). She cannot eat any of the things that for the first years of her life were the source of great fun for her. When she was little, she would sometimes dream that she was cured, and then in the morning, she would cry about getting the blood tests and the shots. Sometimes, she has accidentally taken too much insulin, and has lost consciousness, or seized. When she takes less than she needs, or develops greater needs because of an infection, she starts vomiting, with acute abdominal pain. She has not been in her target hemoglobin A1C range for over 5 years. She outgrew my insurance, and now is uninsured, and uninsurable, because diabetics cannot get medical insurance. And not a day goes by that I do not fear she may pass out in her apartment, like many diabetics do, too low, or too high, and never wake up. I've never been in a blog before, Trai, but I really HATE that comparison of "chronic condition like diabetes". Some contest. I'm a physician, and a mom, and I just don't THINK we should settle for "chronic" conditions like juvenile diabetes or AIDS. We should be insisting on CURES. There are "lucky" people with HIV and "lucky" people with insulin-dependent diabetes who have, in their opinions, tolerable lives with the currently available therapies. I live in the Dominican Republic, where people are QUITE thrilled to get AIDS drugs, and yes, I think to some degree, I am relieving the suffering of some of them, but for many, it's different suffering with the drugs, maybe buying them a few years, but I think it's time for us to turn up the activism that gave us protease inhibitors and non-nukes, and turn that activism into finding a CURE. Ditto for the juvenile diabetics. Please, don't lose hope, yours, the rocknrollmd

Wednesday July 27, 2005 1:56 AM

than hangover maintenance. diabetes is a secretive disease, even though it’s not shameful. to me, it’s needles & food & exercise & fatigue & questionable eyesight & qi. i give myself subcutaneous insulin shots four times a day, rain or shine. i take blood sugar readings at least four times a day—four fresh opportunities a day to fail. all this in alien bathrooms if i’m not at home. in the crowded back corner of the tented beingALIVE booth gay pride weekend. i give myself insulin shots in my thighs—the skin around my gut is too thin. carrying needles is icky, particularly on a date. i have a type of peripheral neuropathy in my feet from aids/arvs that is similar to the neuropathies diabetics can develop. if i don’t manage my blood sugar, i can get all sorts of skin infections that are hugely uncomfortable in the summer—not unlike the hiv-generated skin rashes i get anyway. and oral thrush. i’ll tell you about diabetes and weight gain some other time. i never thought about whether anyone would hesitate to date a diabetic. overall, aids overshadows diabetes, even though both involve issues of mortality and quality of life and personal activism. diabetes does not require a degree in rocket science to figure out what’s going on. nor as many consulting rocket scientists.

"my medic alert bracelet says aids & diabetes. we must find cures for both."

http://www.duckspot.com/rk/eoe-5-027-c2ea-diabetes.htm

i was hospitalized in may with blood sugar levels averaging 400. (they should be around 100) high blood sugar is also experienced as fatigue, kicking the shit out of the fatigue i already have. now that my blood sugar levels are doing better, my fatigue is doing better. i had been on a non-protease-inhibitor cocktail until january (i had been hospitalized in december for arv-generated recurring acute pancreatitis--now acute on chronic pancreatitis). then i switched to a cocktail that included reyataz. so it's possible that the re-introduction of a pi into my drug mix may have had a role in my blood sugar rise. we completely revamped my insulin program in the hospital. i'm hoping it will hold for a while. eventually, though, it's going to get worse.

i suppose pancreatitis qualifies as a managable disease if you don't know anything about it eiher.

i have to go look through my notes, but a significant number of diabetics (if not a majority) are either unaware of efforts to find a cure for it, or are certain there will be no cure for it before their lives are over, let alone during the next century. there's research going on for a cure for diabetes. but the evidence i've collected so far shows a solid similarity to aids--research efforts for a cure are underfunded or stalled, because big pharma makes a bigger bucks on "maintenance" rather than cure. a market effect, i suppose you could call it. diabetetic maintenance paraphanelia is one of the hottest pharma markets at the moment.

i will double check the d-life survey and get back to you. i can't find where i've put the notes file right at this moment, and i felt it was urgent to make a reply. thanks jonathan for bringing it up. sorry i missed out on the thread until now.

i want to take time to go through the thread carefullly and make specific comments. but thank you worried mama and oltbear and the doctor who told us about his daughters (i can't seem to find your name at the moment).

catch you later.

richard kearns
richard-kearns@sbcglobal.net
on the engines of enlightenment:
journal of an aids shaman
http://www.duckspot.com/rk/EOE-5.index.htm

Wednesday July 27, 2005 2:50 AM

rock&rollmd--

my apologies as well as my thanks. you are a woman. in my haste, my chauvaism raised its ugly head. i am usually more careful than that, but i skimmed the material really quickly and couldn't find your post again. i will do better.

namaste

richard kearns

Wednesday July 27, 2005 6:59 AM

Once Again the topic is not really about HIV versus Diabetes. Please understand what it is really about. This is not a pissing contest nor will I allow it to turn into such.

It is about the diservice we all do to ourselves. Allowing the uneducated and unaffected believe that HIV is manageable disease like Diabetes, Cardiovasular diesease or what ever you choose. As I said I only choose to use Diabetes as it is the disease that is most often told to people that HIV is similiar as a treatable, manageable, chronic condition.

I could have said....You have HIV...it is not the death sentence it once was, thanks to all the new treatments ( no mention of numerous side effects), it is a treatable chronic condition like _________. Now you feel in the blank with whatever disease you chose. Folks that is what this topic is about.

Some interesting thought have come up. And some people have taken it as a personal attack on Diabetes and not really seen what the entire topic is really about. I am sorry to the people who deal with Diabetes everyday as I do understand the disease as I said both my parents have/ had it. And they both have cardiovascular disease as well.

T Rai

Wednesday July 27, 2005 7:43 AM

I have been HIV positive for God knows how long and on triple therapy for 7 years. As far as I am concerned it is totally manageable so long as you take your meds on time and have your blood tests done regularly. I find if I have a meal before my meds it reduces any side effects. In fact i cant remember the last side effect - headache??

I am only on about my third regime so have plenty more to cycle through before I run out and by then there should be more - i hope.

I am a widowed Mom and have everything to live for - got this disease from my late husband.

sandy

Wednesday July 27, 2005 8:09 AM

Wednesday July 27, 2005 11:14 AM

t-

i have done bloodsugar and insulin shots and pills and breakfast and have mulled over your response and think i know where we are snagged.

this isn't a pissing cotest. this is an analogy, which is basically a metaphor.

so we're not talking about factual, literal one-to-one correcpondences. we're talking about a comparison--a metaphor--which has to do with generating new ideas and new truth, rather than making a factual statement.

if i say aids is like a time bomb, i'm not saying my body is going to blow up in t minus thirty minutes. but i'm creating an understanding, because the progression of my hiv disease may accelerate very suddenly very rapidly. that's a metaphor that works.

if i say aids is like an old sock, you're going to be mystified. the metaphor--whatever might have been intended by it--didn't work. it was unsuccessful in creating a new understanding.

if i say aids is like getting a cold, that metaphor doesn't stand up either.

if i say aids is like diabetes, we've hit a middle ground, where there's some merit to the metaphor and there's some problem with it too. i am unsatisfied with the new understanding that the metaphor creates.

essentially, we're looking for a metaphor that says, "today, aids isn't so bad that you're going to die by the end of the week. don't be scared. get back on your feet. don't let yourself be debilitated by it."

the implication is that somehow hiv disease is easier to handle than it used to be--see? it's really like this other disease, diabetes, which is easy. the problem is diabetes isn't easy. so the metaphor fails to support the hoped-for understanding. at least for me.

the only way to test the strength of the metaphor is to examine the details of the image--not the factual correspondence.

i blush to say it, but i taught journalism, creative writing, expository writing, all sorts of kinds of writing, as well as (occasionally) literature on the college level for 10-12 years, before i became too sick to continue. my professional writing career started when i was hired as the first staff writer for gallery magazine in 1971. so i'm pretty grounded when it comes to language philosophy.

a comparison is not a competition.

does this make better sense to you? have we got some comon ground now?

looking forward to hearing back.

richard kearns

Wednesday July 27, 2005 3:09 PM

Sadly, the metaphor only works if people have a true understanding of the depth and breadth of both diseases. As is evidenced here, many with HIV do not understand the most serious manifestations of diabetes, and I imagine that most laypersons share that gap in true awareness.

As was mentioned here, though.... and with some degree of irony .... with the impact these drugs have on many of us, we do not HAVE to compare. We can manifest both diseases in the same body.

It's one of the things that seems to have hit me the hardest with my own cancer diagnosis. The weird feeling that I already HAD one terminal illness. I thought I'd reached my quota <g>. That feeling of perceived immunity to the rest of life's slings and arrows can set one up for quite a shock.

jonathan

Wednesday July 27, 2005 4:23 PM

some minute genetic level, we are all related - those of us with HIV- and we act like a family.

Here's an analogy for you: Think of our (HIV) community members with whom you do not agree with as an ugly sister (not a foe). You can call my sister ugly, and get away with it. But there will be hell to pay for anyone not in the family that calls her ugly.

I am by nature a very passionate person, and I wish I could somehow show you my honesty and sincerety. I feel a true familiarity with other HIV+ folks. I was dx with AIDS almost 7 years ago and it changed my life. I have dedicated my personal, academic and professional life to helping our community. Let's all do some small part. (maybe this part would have been better placed in the advocacy forum).

In Peace.

johnrossi

Thursday July 28, 2005 2:02 AM

dear jonathan—

you won my heart over a while ago, and i have wept for your suffering because i recognize it. it is mine too.

i will tell you the truth because i am pledged to tell the truth as a part of my own political activism, cultural activism and spiritual activism. i will also tell you the truth because i love you.

to me, aids is more like death than diabetes.

my aids is my mortality, and it is yours too, whether you are infected or not.

and my experience with death is similar to my experience with diabetes. i have died several times already, the latest in december of 2003, when i tried to kill myself. i woke up tied to the bed in a catholic hospital in denver where not only did they not approve of my attempted suicide, they didn’t approve of my sexuality or my disease. they didn’t know dick about treating my disease, either.

the best way to explain it was i died and came back as myself. reincarnated.

i am content to be here—more than content. i have the sense that i am needed here, that there is still work in the world for me to seek out and perform. i know i will die again, but death doesn’t hurt me. i am not as afraid of it.

i believe in you.

i hear your struggles, and i see you rising triumphant over your adversities. and i am an unusually experienced witness.

trust me.

believe in me.

these are the things we all must learn how to say to one another. it does not matter whether aids is like diabetes, or diabetes is like aids. it is the love that matters.

namasté.

the god in me greets the god in you. the spirit in me meets the same spirit in you.

we are one.

richard kearns

Thursday July 28, 2005 2:04 AM

john—

inside every ugly sister is a beautiful sister struggling to break free. i know this is true. i am an ugly sister.

i read what you wrote and i hear poetry.

we are not a voice to be silenced
we are not lesser people
we are not inferior
we are not afraid

your voice echoes the voice of another voice that called out to us from across the pacific earlier this month:
“‘the voice of positive people needs strengthening and it needs to ring out loud and clear at every level and within every government department and in every country,’ said maura elaripe mea during the closing ceremony of the seventh international congress on aids in asia and the pacific in kobe, japan, according to a july 5 ap report.

“as an hiv-positive woman from the impoverished pacific nation of papua new guinea,” ap medical writer margie mason noted, [maura elaripe mea] “represents the growing face of the disease in the region where about 40 percent of the 8.2 million people infected are female.

mason continued: “mea called on everyone to battle extreme stigma and discrimination that people living with the virus face daily, so that more positive people from a number of countries can speak up and reach out for help.

“‘we cannot just sit back and let the issue of ... scaling up access to treatment slip through our hands while our brothers and sisters continue to die and infections continue to rise,’ she said,” according to the ap report.

yeah, do take a look at the aids activism thread. i left a whopper of a note there, and i’m afraid i might have scared some people off. after you’ve seen it and left your response, please drop me a note at richard-kearns@sbcglobal.net. i have some questions for you about how to work the software on this site. i know how to post comments, but that's about it.

thanks.

namasté

richard kearns