January 2009 Archives

For once I thought I would start off one of my blogs bluntly without any sugar coating. So here it goes. One of the state provided health insurance plans in Massachusetts is called MassHealth. There are thousands of people, like myself, who are forced to take this insurance because we are living with HV/AIDS and do not have ANY alternatives. The only little wrinkle here is that MassHealth is one of the most poorly run, managed, and totally fucked up health insurance plans on the planet. I cannot even comprehend the level of damage and harm they have done by their stupidity, idiotic rules, and refusal to pay health care providers that are willing to accept their pathetic reimbursement rates and see patients with HIV, hepatitis, active substance abuse, the homeless, the severely mentally ill and other disenfranchised people in desperate need. They are simply and bluntly FUCK UPS of the first degree.

Now, I know my regular readers are just appalled at my candor and language, but I have a feeling they will get over it. New readers will have to get use it. This is just the way it is. So read on or don't, It is all up to you but I plan and saying what really needs to be said about MassHealth and make sure that our Governor, and the powers-that-be at MassHealth get a copy of this posting and see if ANYONE...maybe you Gov. Deval Patrick? or maybe the Secretary of Health and Human Services Dr.JudyAnn Bigby...will have the guts to look into this debacle that is most likely harming if not outright killing people. I am not expecting anything to happen so I stand no chance of being disappointed here.

Okay here is what I am dealing with today for my patients and for myself. Many of my MassHealth patients desperately need (yes, I even agree that that the drug cost is outrageous) a very expensive drug take nightly by injection to help them gain weight, fight HIV wasting syndrome, improved their HIV induced lipodystrophy of facial wasting, limb fat loss, and other metabolic disorders. This drug typically is a God send to many patients as they take it along with their antiretroviral therapy. They feel better, look better (and reduce the social stigmata of gross wasting syndrome), some very well done peer-reviewed research studies suggest that this drug (a form of human growth hormone) may even assist with viral suppression and increase CD4 counts. I have seen this drug literally pull some of my patients back from the brink of death when their wasting was severe.

All sounds great right? Well, here is the stupid kick in rubber parts for most us on MassHealth. Basically, you can only get this drug by having a willing health care provider go through mounds of paper work for the infamous "Prior Approval" process. Okay, I am willing to do this, I have long ago given up the hope that our health is NOT being dictated by faceless, nameless, and sometimes heartless beings that live in cave of MassHealth somewhere in Boston...kind of like the secured, non-disclosed location that use to run Dick Cheney off to every time someone said they might pop off George W. Bush. The bottom line is MassHealth and so many other insurance companies (yea, in conjunction with the greed of big Pharma) are the ones managing your health care in reality. My three graduate degrees, specialty certifications, honors, awards, publications, and decades of clinical experience do not really count. Some vaporized person of God knows what educational background makes the decision, and sends back into the ether if they are going to let me practice medicine and help someone or not.

Recently, I was standing in Coliseum in Italy and the first image that came to my mind was "thumbs up/thumbs down" of allowing a warrior to live or die by the Emperor and that Emperor was health care insurers in general and MassHealth in particular. It was a chilling realization.

I am going to use my recent bout of needing to change my ART due to mitocondrial toxicity, virological decline, weight loss and numerous other debilitating symptoms that I have blogged about. MassHealth started to DECLINE my life-enhancing growth hormone because I was SICK. As long as I was well, gaining weight, and my HIV was stable I had no trouble (except for repeating the mounds of unnecessary paper work) monthly to get growth hormone. Once my health took a nose dive and I lost weight, saw my CD4 count plummet, and felt like living hell off the medication it was denied once, and then again, and then again. All of which made my clinical spiral downward speed up and nearly killed me.

Ah, but take heart. I happen to be practicing in a clinical practice (maybe the only one on the entire Cape. The big time non-profit don’t seem to bother with such nasty stuff since they have government funding and tons of money so why should they care about patients as long as the funding keeps coming in as it does) that actually cares about our patients and my wonderful nurse practitioner sat down and wrote a two page letter of appeal to these geniuses at MassHealth pointing out that I clinically, ethically, and medically needed the support of continuing on growth hormone since I was VERY SICK. (Imagine that, I needed medication because I was sick, and not because I was well. Go figure.)

My NP pointed out the obvious stupidity of their policy, the impact on my health, and that she was frankly not going to stand for it anymore and watch me waste away while my HIV hopefully stabilized on new a new ART regimen. She asked for a prompt reply and for 3 to 6 months of approval of my medication. Oh, the prompt reply by the great faceless ones did happen, but only for ONE month. So I will have to show clinical improvement, gain weight, and improve my counts by the end of February so I can submit all of this paperwork again for the MassHealth Emperor to let me know if the Emperor is interested in letting me get better, or turn thumbs down and fuck me and my life threatening illness.

Of course, I could fill pages with other MassHealth, and others insurers "rules", to see who gets needed drugs or not but I do not have the time right now. I have to shove food down my throat, prayer that my new AIDS regimen is going to do the trick, and hit the gym first thing in the morning regardless of how I feel. After all I don't want to be thrown to lions...well, not yet anyway.

Well folks it has been nearly two weeks since I started my new meds after 13 years of one the same regimen. The phrase: "Better the devil the you know you than don't know" keeps running through my mind like the crap in my guts. I feel like shit.

Every time I think I have turned the corner or begun my peace process with this new chemotherapy I am kicked in the balls. This is truly amazing to me. When I get up in the morning and stare at these simple ordinary looking little pills in my med box I think today will be no big deal, and then by the afternoon I have the energy and personality of kitchen sponge.

What is really beginning to scare me is that what if these pills are not the right ones for me, and I have to go through all over again after I check my counts in a couple more weeks? Will I do it? Today I am not so sure. Like I said I feel like shit and I am tired of it, and having very few people on my health care team really understand what I mean.

Several years ago I wrote a very popular article called "I am Having an AIDS Day". The magazine that it appeared in was overwhelmed with letters to the editor praising the what I said in the article. The gist of the article was simple. In all the hoopla over advanced therapies for HIV, people like you and me, still taking these fucking pills wake up some days feeling like hell warmed over even through are "numbers are great!" There is the shortness of breath, loose stool, pain, and more pain (and did I say PAIN?), plus fatigue, and the fucking wonder of how you are going to put one foot in front of the other and do what needs to be done. Sometime "AIDS days" simply knock you so hard on your ass that that doing what needs to be done is not even a conceivable option. Today is almost one of those days. Today I want to hide from the world instead of going into see patients for 8 hours, walk the dogs, cook dinner, train at the gym, and hit an AA meeting.

So at 53 today I feel 83 and can barely move. My recovery tells me that I need to each day one day at a time. While this has been my mantra, and a good one at that, I sometimes get in the head trap of very short version of Serenity Prayer which is "Fuck it."

So today the whole notion of God granting me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference has simply been boiled down to fuck it today.

So fuck it to one and all and I will see you a little later or maybe on the flip side. And days like today make the flip side look more and more appealing.

Well it seems my entry into the POZ blog world is making people think, get annoyed, and even some appear to have the answers to my life's problems. This is just great, but who the hell asked you? Not me.

Anyway, tonight I am about five days into my new pills and feel like I have been dropped kicked by a Dominican nun. But my gut tells all is going to be okay. The new pills are slowly settling into place and hopefully we will establish a respectful coexistence.

I was struck by the reader who said maybe I was demonizing HIV therapy a little too much, and he has a good point. But the fact of the matter is what failed to get across is that those of us living with HIV and hepatitis (and any other life-threatening chronic disease for that matter) is that the drug companies have brainwashed us into believing that if we take THEIR AIDS MEDS everything will be just grand. We will all be on a sail boat, muscled up, tanned, and having a fuck of a good time. Or maybe be so damn excited about once a day therapy we will be jumping over dildos in Times Squares (they were dildos weren't they?) Well guess what...bullshit. They are just pills. Damn good pills, but just pills nonetheless.

I talk to my patients about this all the time. I tell them pills are just medications in a bottle. They are not magic beans. You cannot think life is going to get better just by talking some funny looking tablets a couple of times a day. There is a lot of other stuff that goes with the damn chemotherapy. If you don't clean up your house - at least a little - all the damn pills in the world aren't going to do you much good.

I should know. I was the poster boy for bad behavior (as I have previously pointed out and will again and again). I can distinctly recall swallowing my AIDS meds with 12 year old Scotch for nights on end, and never did it occur to me that maybe it was not such a great idea. Or making sure I took my meds as I was filling up syringes with meth to slam. I made sure everything had its time and place. I actually got really pissed once as I was puking my AIDS meds up that caused me to miss my vein to inject meth. Why the hell did the AIDS meds have to make me so fucking sick I thought. Got to love the magical thinking of addition.

But those are extreme examples and I damn lucky to have escaped. However, the stuff that most people deal with - while it may not be as dramatic as my little gig – is still screwing them over. I see it every day. People continue to smoke cigarettes, consider gravy a daily beverage, and develop severe hand and thumb pain from too many clicks of the remote. Anyone who thinks that any pill in any bottle for any disease is going to rise up and heal in the face of life of toxic chemicals and fat needs to rethink that reality because it isn't going to happen.

Outside of practicing HIV medicine I am also a personal trainer. People at the gym come up to me daily and ask questions and want advice. First, they want to know how old I am (I am 53 and proud of it) and how did I get such a nice body. Don't get me wrong I am flattered every single time this happens, but I simply say I worked for it. I had to make hard choices. I had to put down the booze and drugs, fix the way I eat, and hit the gym with someone who actually knows how to work out. (Actually, the reason I became an AFAA certified personal trainer was to help my patients with action and not just talk - and NO I don't charge patients training fees so get your "holier-than-thou" fingers off the keyboard right now.)

But I believe living a well life still takes more than diet, exercise, and limiting toxins. It takes humor, hope, love, and God. Yes, I use the God word. If it annoys you - well fuck off. Use any word you want. This is my blog and I believe in God. You can call God your "higher power", Mike or Shirley for all I care. Just know that there is something out there greater than you and tap into it. Don't buy it? Just try telling the sun to set at noon and see how far you get.

HIV meds are great but they are just pills. AIDS is a hard disease to live with no matter how well you do it or how much you have to clean up your act. It is hard no matter what cards have been dealt you.

It is also important to remember life, living with AIDS, and dealing with the world is slow and evolving process. It takes time to tuck away some of the bad stuff. Some people never get it done and that is sad. Taking is one day at a time is best adjunct to pills that I can think of right now. No one has a magic wand that is going wave all the bad stuff away. Clicking your heals three times only makes you look foolish and doesn’t send you back home to as place of where love and happiness over flow like milk and honey.

It takes balls to live with AIDS. It takes time, understanding, and partnering with your health care provider to get from where you are to where you want to be. The journey will not always be smooth. The bumps in the road (did I mention that my left lung collapsed five times post 9/11? Read "My Left Lung" on www.RichardFerri.com if you want so I don't have to do that word dance here.) can sometimes be very harsh, but if you start to build a good foundation you will survive. You may even thrive.

So here goes the deal. My name is Ric Ferri. I have a ton of degrees and honors for my work in HIV disease. I have written a lot for HIV journals and magazines and am thrilled be joining the POZ blogging team. I was elected predient of the Association of Nurses in AIDS Care back when the organization had a real heart and vision, and then went on to become president of the HIV/AIDS Nursing Certification Board which credentials nurses as experts in AIDS care. I have also been a loud mouth and pain in the ass to many people in the area of HIV primary health care because I practice HIV medicine, write about HIV medicine, and am living with AIDS. So there you have the basics.

I am a HIV positive AIDS medical provider and my view of the world is a little different than most of the talking heads I sit on “expert” panels with around the world. There is a lot of other stuff to that will seep out over time like my addiction and recovery to booze, meth, and raunchy sex. The fact I was made a widower overnight due to my late husband coming into constant contact with second hand smoke. The absolute joy that I did not turn into the "widower man" in Provincetown, and met a wonderful man who I love very much. His name is Jim Lear and he is a great man, great partner, and great veterinarian. More to follow I am sure.

Anyway enough of this "me" stuff for now. If you really want to know anything all you have to do is ask. I either will tell you what you want to know or tell you have crossed the line. (Although I have never done drawn that line yet...maybe you can be the first?) Either way I will get back to you. You can also find out more about me and my antics at www.RichardFerri.com if you want.

But as I write my first blog for POZ my mind is slammed directly and deeply into the wreckage of my future. Addicts have a great way of living in fear of the future and making a mess of it. Why the hell do you think I drank and slammed meth for? Anything to escape today and avoid tomorrow. However, literally tomorrow is a milestone day for me. After 13 years on one HIV drug combo with only a few bumps in the road (okay more than a few but I am spilling the beans here again. Remind me to tell you about being sucker punched and nearly killed on 9/11 while my parents all suddenly decided to die within weeks of each other.)

Anyway tomorrow I am starting a brand new drug regimen for my HIV. I am thrilled and scared shitless at the same time. This is something AIDS health care providers just don't get. They stand around and talk to us about new drug combos and switching, stopping, and fuck knows what else like it no big deal is. Now in my head filled with science, medicine and HIV I am hearing the worst of the worst.

My old pills are like annoying friends that I never thought would desert me, but they have. (In fact I just swallowed the last of them with a cup of coffee - don't tell on me okay?) They were the demons I knew well. I could dance with those devils very nicely. However, my new pills still sit in their nice sanitary bag from the pharmacy. I think I am scared to let them out thinking that the HIV genie is going to appear, hit me in the head.

So here I am in the panic of what is yet to be. My meds (can we all say "life-long chemotherapy" out loud, and mean it?) are still covered in paper, and I glance at them like they may try to attack while I am not looking. Well, just they might. If you are taking HIV meds you know exactly what I am talking about. You just never know when they might turn on you and bite you in your T cells.

Living in the wreckage of my future is a nice comfortable place to hang out. I get to worry about what has not happened yet, build up enormous fantasies about the disaster that is certainly laying in wait, and prepare to start sitting my own Shiva. It is also comforting to worry and lets my mind wander back to why I bother to get sober. (Did I mention I was in jail for 3 days with a DUI before I even knew it? Of course with a blood alcohol level of THREE (yep, 3.0!) it still is a mystery as to why I woke up at all.)

But I am also excited in my own way. While I am enormously thankful for 13 very long years on the same meds - which is totally unheard of - I know it is time to change. My old pill buddies have finally decided to kick me in the ass with low T cells, paralyzing fatigue, and muscle wasting. Never mind the fun other symptoms such as crapping my brains out with some nice dry heaves thrown in. But what the hell. I am told it is no big deal. Like hell it isn't. It is a fucking big deal. I have jumped over both sides of the HIV pill bottle too many times. I not only prescribe these medications I take them. I may be many things but I am not a fool. Changing meds is hard. Forget what we in the lab coats tell you (by the way I don't own a lab coat) life on HIV meds can be hard. Changing is scary. Just because we have some really great drugs out there does not mean HIV is just another annoying disease to live the rest of your life with. I simply say bullshit to that.

So I will keep you posted on my new adventures. Please send comments and questions. My goal with my POZ blog is shake up some of the thinking you and your heath care provider may have. Instill a little reality no matter what the consequences. I also firmly believe in treating the whole person and not just the virus. If you are a patient in my practice you and your health get my full attention. I work WITH patients. I demand that symptoms be managed. I also realize that HIV is not the only thing on people's health care plate, and I look at it all and not send patients off to have their prostate evaluated by someone else. Today, HIV medical care needs to be totally comprehensive and not parceled out. Not many providers are doing that. I hope that if they read my words for a while they might actually see the light.

Anyway, I am here for you and (yes) for me. The most important person in any exam room is the patient. Remember that. You are in charge. Those of us with prescription pads should be leaders and guides but not dictators. Patients do count. You count. I count.

Now off to sneak a peek at my new pill bottles and decide if I dare unleash them from their bag. Ah, what the hell. My future is already a mess in my mind so let those fuckers out and let’s see what happens.