Treatment

“Do not go gentle into that good night,” wrote Dylan Thomas.  That seems to be the prevailing subtext of the 2010 HIV Research Catalyst Forum.  From April 20^th until April 23^rd,  a large collection of HIV Activists gathered in Baltimore, Maryland at the Renaissance Harborplace Hotel to discuss the latest in treatment issues, new strategies to energize their activist base and bring new individuals into the fold, creative ways to deal with pharmaceutical companies, and discussing exactly how the health care reform will affect people living with HIV/AIDS.

The original fervor of the movement that existed in the 80s when everyone was dying from and not living with AIDS, no longer exists. Even for those in the movement, being able to take a few pills and keep the wolf at bay calms them down as well.  However, do not let that fool you.  The activitists present here are not willing to go anything near gentle into that dark finality of night.  People like Linda Dee and Tracy Swan realize what the future could hold for people living with HIV, and it is not a picture perfect Hollywood ending.  Nelson Vergel, long time survivor and activist knows only all too well what physical costs long term survivors pay with the side effects that wreak havoc on their bodies.  Sure, you are alive, but at what cost?

Matt Sharp remembers a time when doing anything was the norm because there was nothing to be had.  He shared his experiences about a thyroid graft, an attempt at treating him that went unfinished because the drugs started to work their magic.  read more »

BJ Cavnor Inteviews Ann Lefert of NASTAD.

Well, it seems the technical issues are resolved and the blog is able to be accessed again…yay!  I thought for sure it was user error on my part, but thankfully I can say it wasn’t me.  That being said, day one was great.  I felt like there was a lot of information covered in a short amount of time.  We received a lot of the ‘what’ and ‘why’, now I’m looking forward to the ‘how’ today.  It is apparent this could easily be a two week forum with all of the information that is available, but I’m grateful to have the couple of days that we do have.

I’m still processing a lot of the information received yesterday, but I think the standout moment for my personal self was when Nelson Vergel spoke during the first session of the treatment symposium.  Having suffered some of the metabolic issues related to treatment and fully feeling the physcological impacts in my own life, it really hit home.  I hope I get the opportunity to thank Nelson in person while here; the work he has done advocating has directly affected my daily life.  I recently underwent Sculptra treatments and have had an immediate lift to my self esteem and emotional well being.  Without the efforts of Nelson and others like him it’s likely the gap in treatment for such issues would not have been filled.  I look forward to learning more today in hopes that I can work to further fill in the gaps and keep the fight alive to ensure others get the treatments they so rightly deserve.

Hello everyone, just wanted to say what a great time I've been having at the Forum. I hope everyone who is attending is finding the information they need to take back to their home states!

I've had several questions regarding next week's AIDS Watch.  So, here's the link to NAPWA's page that discusses AIDS Watch http://www.napwa.org/index.php?option=com_content&view=article&id=5&Itemid=10.

I've also got additional information that I can email you if you need it, so let me know.  You can talk to me at the Forum or you can email me at im1drny@hotmail.com.

Also, let me know what your state is doing to implement health reform!  I'll talk about that later.

Kisses,

Michael Foy Mitchell

The conference could go on for another week - I wouldn't mind. And not because of the wonderful hotel and the great people, but because there is so much information.

I attended the 9:00 a.m. Treatment Symposium where David Evans began speaking about current treatment challenges. He wondered why people are surprised that HAART adherence remains an issue today. Certainly, someone taking one pill (or a few pills, sometimes) for the rest of their life is easy! Isn't it? Unfortunately, some health care professionals are baffled by non-adherence.

Nelson Vergel from PoWeRUSA discussed the issue of body image and how HAART is associated with metabolic disorders such as lipoatrophy, fat accumulation, and hyper-lactatemia. And thanks for the tip! "Never use the word 'cosmetic' when advocating for reconstructive surgery."

These topics are relevant to me as a future behavioral health professional. Psychologists or therapists who work in a medical setting can foster self-efficacy beliefs of individuals who are faced with the challenge of high percentage regimen adherence. They can also help patients with body issues and self-esteem, keeping in mind pressures of gay popular culture to appear a certain way.

At this morning's symposium, someone mentioned the issue of underreporting side effects from HAART. Patients, especially long-term survivors, sometimes compare side effects experienced today with side effects experienced 10-20 years ago. In the current health setting, face-to-face time with physicians is extremely limited. It often takes time and prodding to get to the bottom of a patient's true experience with their HAART regimen.

The point is that pharmaceutical companies market their drugs to physicians and inquire into patient well-being in terms of side effects.  Physicians sometimes (and the speaker believes this is more often than not) report that their patients are so grateful for the newest regimens that they report "all is fine." Because psychologists see patients more frequently, it is an excellent opportunity to lay this misinformation to rest. Psychologists should speak with primary care physicians about HAART side effects reported by clients, of course with patient consent, which is often the case in a multidisciplinary setting. Health psychologists need to speak up on behalf of their patients when pharmaceutical companies inquire into HAART side effects. This will offer support for the need to continue with funded research into new treatment options.

So much I've learned in just one day. Thanks HIVRCF.

Tonights opening plenary session was so uplifting and fear inspiring. I loved the heartfelt stories of the trails and tribulations of getting oneself involved in the fight of saving ones life and helping others to gain the needed knowledge to remember that the fight is not over yet!!!!

I was looking at the scholarship Break down and I want to say that I am from NJ and only 2 applicants received a scholarship so I want to say a deep felt thank you to Tracy Swan for reading my application and accepting me to attend.......  read more »