Health Care for the Rich

Its getting so that only the rich can afford to be ill these days, and I'm afraid it doesn't seem to be getting any better in the near future.

As chronically ill person it was distressing to hear that next year all the small tax deductibles will no longer be available. So no writing off extra medication, therapy, hospitalization etc that is not covered by the insurance companies. Its more than unfortunate of course that insurance companies these days have decided that even with very expensive policies usually not more than 75% of this kind of thing is claimable anyway.

Psychiatric help has also been dramatically reduced to a maximum of 12 sessions a year with any kind of psychiatric practitioner, psychiatrist or psycho-therapist. As if the government/insurance companies can determine that's enough. "Sorry sir but although you are chronically ill and have mental health issues that may or may not be related to this, you are officially healed after 12 sessions with a shrink".

Imagine my distress a couple of days ago when I found out that as per january 2009 all medication used to treat anxiety disorders, stress disorders, sleep disorders and the like will no longer be paid for by the insurance companies.

No, not even the most expensive policies will honour a prescription. People with mental health problems will have to pay for their own medication.

The logic?

According to the leaflet ....

"This sort of medication is only meant to be used for a short while. Having to pay for it yourself will help you to keep its use to a minimum."

On a day that one of the largest countries in the world decide who will be their leader, where one of the crucial questions is a National Health Care Plan, on the other side of the water what was the most liberal of all countries is rapidly demolishing its Health Care.

.... and no-one says a word ....

I'd start saving up for your HAART medication if I was you - after all - it was your own fault now wasn't it ....

Silence = Death

Optimism

No, I refuse to be optimistic about hiv and/or aids.

And no, that doesn't mean I have to be cynical either.

Realistic.

In New York, the third leading cause of death in men under the age of 65 is still aids.

People with hiv climb mountains, swim rivers, dance the tango .... and die.

Don't be silly. Honestly, who still dies from AIDS?

And no, I don't mean all the little brown babies in Africa.

In a world where people are still dying of opportunistic diseases as a result of suppressed immune systems I see no reason to lie.

I mean all the Western European Gay men whose HAART medication fails to handle the virus, whose liver gets eaten away by cancer because they are more at risk than non-hiv'ers, whose lungs rot because they smoke/have smoked and are 3 times more at risk of acquiring lung cancer.

Men who have never been tested and now see themselves as too old to catch hiv, die because the medication comes too late. Because they only find out they are infected when they wake up in the Emergency Room of their local hospital.

Men who have religiously taken their medication for 10 years or more and now die of rectal cancer, lung cancer, heart disease, stomach cancer, lymphoma's, liver and kidney failure etc. All or none of which may or may not be related to the hiv virus and/or medication against it.

Men who were infected with a hiv strain that is resistant to known drugs, who live day by day until the next new aids drug comes on the market. Brave men who sometimes just can't hold on long enough.

Men who lose faith in medicine, who turn to non-western doctors for a gentler way of surviving, who are tired of medication, tired of fighting.

No,

Being a Gay man with hiv is not something to be optimistic about.

I can live till I'm 90, but I will probably still have the problems to face that I face every day.

Chronic tiredness, swollen glands, diarrhea, opportunistic infections.

The anxiety of discovering a bruise, a mark, a sore, a pain, an ache. What is it? Its nothing. Its everything. Its nothing.

Optimism is a word we use to ignore hiv and aids.

Optimism makes it all go away.

It won't go away.

reference: New York Times Magazine

a vision of hell without fear

Now what I'm about to say may never reach the general media,

Religions and Dogmas all over the world will try to silence this news,

Institutions that exist solely to feed off Aids subsidy will try to bury this,

.... so listen very carefully for I will say this only once .....

"HIV-positive patients with an undetectable viral load infrequently change their anti-HIV treatment because of side-effects nowadays, according to the results of a British study published in the May 31^st edition of AIDS."

source: aidsmap 

With the latest wave of hiv designer drugs showing their true worth in delivering effective results with almost zero intolerance in terms of side effects, and a new compound found that could lead to another new design of drugs, then the long term goal of truly 'liveable' medication could become reality.

No longer the 'poison' that we all view our medication as. No longer the idea that the pills can only stop the virus by damaging our bodies. No longer having to live damaged lives.

But ....

Not everyone is going to want the world to hear this.

Hiv infection without death, without pain? without even discomfort? 

How will the Church cope with a potential sinner without the promise of hell?

How will a Government cope with gay sex without consequences?

How will all those Institutions survive that only survive because of subsidy, if there is nothing for them to do?

 

.... and who will pay for it all ? .......

G

Yesterday afternoon, bright and sunny, bitterly cold but no deterrent to sitting on the Terrace of the Engel and drinking coffee/wine with the other regulars.

And then there was a blast from the past, G. Never a friend, nor really an acquaintance. More someone who I would have liked to have spent more time with over the past 20+ years. Our paths crossed and uncrossed at regular but sparse intervals over the years. He witnessed my ex, the downfall of said relationship, my various career moves without being an integral part of them.

A lovely man, a gentle man, a proud man.

So he sits down and tells me he has 8 to 9 months left to live because he has liver cancer.

With the directness that seems to be the sole right of terminally ill people I get the story, although honesty demands that I say that I did push slightly.

A long term survivor of hiv, he has been medicated since lord knows when. AZT, mono-therapy, cocktails, protease inhibitors etc etc etc. That he's had Chronic Hepatitis B for years hasn't helped his liver functions. But that isn't what's killing him.

Every 3 months we go to the hospital to get our CD4 and VL counts and then we are sent home till the next time. As if that's all a doctor needs to know to declare us healthy. We know that hiv drugs are harmful to our bodies, but that seems to get overlooked. Screening for liver functions once a year clearly isn't enough, but why doesn't it happen more often? Anal cancer only gets tested if the patient has clear symptoms, but it can be present in the body for months before it becomes a problem. Low hormone levels, an indication of what? Hiv is a chronic disease, why don't we get full screening? Too expensive?

Of course other people get cancer, and liver cancer is notoriously untreatable, and there is not necessarily a connection but is it not time that we looked at the consequences of long term antiretroviral use?

This is 2 people in the last few months who we thought were going to live as long as their hiv negative counterparts through the miracle of modern science and the benevolence of pharmaceutical companies.

Trust your body, mistrust figures, demand facts.

the Good News and the Bad News

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the Good News

The land of chocolate, cow bells, and nazi bank accounts has proven what we've all suspected for a while now - a non-detetectable viral load gives a (clinically) negligible chance of transfer. Very simply said; if you take your meds then the chance that you can infect anyone else is technically zero.

The Americans et al are up in arms about this of course. Our status just moved from 'potential murderers' to 'nice people who take pills'.


the Bad News

The Liberal Netherlands moves one step further away from utopia.

The Nederlandse Algemene Wet Bijzondere Ziektekosten or AWBZ as it is called is a general law (or group of rules) organising insurance payment for so called 'special illnesses'. In Dutch Law these 'special illnesses' are termed as such when there is no cure, if there is treatment to halt or reduce the spread of the illness, experimental treatments etc. Nursing homes, hospices etc also fall under this law.

As hiv+ers we are classified as chronically ill and all of our hiv related costs are paid for by this law.

However, yesterday the comittee for advice to the government on public health advised them to remove the AWBZ and hand it over to the commercial health insurance companies. Saying that "they are better equipped to deal with these cases more efficiently and with higher quality". They also added that the cost of the AWBZ for the government is exhorbitant.

What does this mean?

The most vulnerable people in this country, the terminally ill, the chronically ill, the dying, the diseased without hope, the disabled without future - their well-being will be decided upon by commercial insurance companies.

That is, if they can pay for it .... can you?
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see AidsMap

Growing Old Gracefully

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Growing old gracefully is not an option for gay men with hiv according to the New York Times.

The older we get the more ill we become is something we have been telling the medical world for a while now without response. Anal cancer, Lymph cancer, HPV, HCV, KSHV, Castleman's Disease, diabetes, heart disease, renal failure, and of course severe clinical depression and PTST amongst others are becoming more and more prevalent amongst the gay poz community. Even the old favourites that we thought were long gone such as Kaposi's Sarcoma and PCP are rearing their ugly heads again in more dangerous versions such as KSHV and all its variations.

Most Health Care workers have been (are) sticking their heads in the sand, but sometime soon they will have to wake up to a community of gay poz 50+'ers who are in need of constant medical support.
Medical support that will not only have to be individually tailored to each patient but will also be increasingly more expensive.

According to research done in the Netherlands (vague at best), +/- 25% of all hiv plussers are now over 50. I know myself that there are just very few of us still alive at this age. However, thanks to HAART that percentage should be more than doubled in the next 10 years, and in actual figures more than tripled.

As I've said before, the Health Care community is in no way prepared for a flood golf of old pozzers on zimmer frames camping out in their waiting rooms.

We knew when AZT came along that by pushing to get it used without clinical trials we would be setting a precedent and could be asking for trouble along the line. But we had no concept of 'along the line' then, 'now' was all that mattered and lives were saved.

Let's face it. We were/are the pharmaceutical companies dream patients. We didn't care what the side effects were of the un-tested drugs as long as they kept us and our loved ones alive. We didn't ask what the drugs would do after 10 years because we were glad that we had 10 more days to live. We lobbied and pushed and organised ourselves to get as much money as possible to find new drugs, the drug, to end all suffering with no thought of the future because without the drugs there would be no future.

However, we can now never say to a Hospital, Pharmaceutical Company, Professor, Scientist, "Were you careful enough? Did you take into account the long term effects", because we took that responsibility from them.

Quotes from the New York Times article:

Larry Kramer founder of several AIDS advocacy groups, 73 and a long-term survivor, said he had always suspected “it was only a matter of time before stuff like this happened” given the potency of the antiretroviral drugs.

“How long will the human body be able to tolerate that constant bombardment?” he asked. “Well, we are now seeing that many bodies can’t. Once again, just as we thought we were out of the woods, sort of, we have good reason again to be really scared.”

Marty Weinstein, 55 and infected since 1982, has had a pacemaker installed, has been found to have osteoporosis, and has been treated for anal cancer and medicated for severe depression — all in the last year. He also has cognitive deficits.
A former professor of psychology in Chicago, he presses his doctors about cause and effect. Sometimes they offer a hypothesis, he said, but never a certain explanation.

“I know the first concern was keeping us alive,” Mr. Weinstein said. “But now that so many people are going to live longer lives, how are we going to get them through this emotionally and physically?”

How are we going to get through this? With the Health Care System as it is in the Netherlands at this moment I see possibilities and willingness for adaptation. But the so-called Gay Community Care Institutions are far from ready or willing to take this on board. Most of them are still in the process of convincing themselves that Aids is no longer a problem in the Netherlands.

I believe it is this sort of problem that demands we take up the spade ourselves and dig the foundations for the future.
Our Future.
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