HAVEN  Newsletter   Volume XII, Issue No. 9                                                                                                                                         OCTOBER,  2006 HIV/AIDS Volunteer Enrichment Network P.O. Box 514, Arnold, MD 21012; (410) 224-2437; (410) 571-9328 – Fax HAVENINC@aol.com           http://www.havenannapolis.org/ The next newsletter deadline is close of business on the second Friday of the month.  Submissions should be submitted by email as an MS Word document.

 

By Tony Teano

 

At 9:30 AM on Saturday, September 16^th, all of the furniture set outside the night before at Diane and Pete’s home was, sadly, sopping wet.  It was a terribly soggy day.  However, with full confidence that the crabby weather would go away, folks were humming along with the little red-headed girl named Annie… “The sun will come out, tomorrow!”  And so, with fingers crossed “that tomorrow, there’ll be sun,” we bet our bottom dollar.  The result was a much better day for a splendid event.  The weather was sunny on Sullivan Cove on Sunday, September 17^th!  About 60 people attended the annual crab feast, and they enjoyed fried chicken, hotdogs, hamburgers, Chesapeake Bay Blue Crabs, and most important, the company of this beautiful and caring community we call the HAVEN Family.  We're so sorry we had to miss the company of all those who couldn't change their plans and join us on Sunday!  This is always such a hard decision to make--and it's only the second time we've done so.  We are especially grateful for those folks who did double duty in setting up, cooking, and cleaning up to fill in for those who couldn't make it.  Also, thanks again so much to Diane and Pete for hosting HAVEN’s signature events at their lovely home.

 

This workshop is for HIV+ individuals, and it covers: integrating medication regimens into daily life; dealing with difficult emotions; communication skills; evaluating symptoms and treatments; and more.  The course runs for five consecutive Tuesdays at the HAVEN office from 4:30 PM to 6:30 PM.  It will begin on Tuesday, September 26^th and end on Tuesday, October 24^th. To register or to find out more information, contact Raymond Shattuck at 410-626-2834.    

 

By Lut Abdullah

 

HAVEN has received several letters and request by those individuals that are HIV/AIDS defined who are presently incarcerated.  The purpose of their correspondence is asking for "Pen Pals" who can correspond by letter from time to time.  Many of the inmates don't have family members that they can talk to about their status, and inside of the institution it almost unheard of for a inmate to share their status with others for reasons of guilt, shame or fear.  Many of these inmates just want to be able to reach out to someone so that they can finally be honest about themselves.
We have developed a criteria for corresponding to these individuals.  The following are examples of rules established to help volunteers maintain healthy boundaries while still responding to this important issue.  No personal return address will be used (you may use the HAVEN PO BOX as such), and you will never give out your last name and or any other personally identifying information.  All mail will be sent to the HAVEN PO BOX, where it will then be forwarded to you.   We will require that you sign and understand an agreement with regards to the criteria for corresponding through HAVEN.If you would like to help in this very much needed effort, or like to get additional information, please contact Tony at 410-224-2437 who will put you in touch with me. 

 

By Hillard Harrison

 

I went through the HAVEN Buddy training about a year and a half ago.  Several months ago, I was approached about being a buddy with someone who not only had HIV, but also suffered from a worsening cancer condition.  Unfortunately, after about 3 months, the individual I “buddied” with passed away.  I hope that our relationship had some positive impact on my buddy’s last months – it certainly made a difference for me and the way I look at things.  In an effort to encourage others to participate in the program, I want to share some of our experiences both in this article and in future training sessions. 

 

In keeping with the concerns of confidentiality, I will refer to my buddy only as T, and just to keep things simple, I will use masculine pronouns.  After I provide some of my experiences, I will make same suggestions about the program and also will be happy to respond to any questions you may have. 

 

T also was working with a public health nurse, and for the introductory meeting the three of us got together in T’s home.  I learned about T’s medical problems and in addition found that he had a criminal record and, in fact, at that time was under house arrest able to go out only for medical and court related reasons. 

 

In addition, he had two children—neither of whom lived at home. The older child was going to school in another state, and the younger one was living with a godparent.  T had not spoken recently with his younger child recently and had not told either about his worsening health situation. 

 

Our first several meetings and talks were spent just getting to know each other a little bit.  I visited about once per week and also telephoned once or twice.  I encouraged T to call his youngest and to tell both of them about his health situation so they would know what was going on and to establish or reestablish their relationship with each other. 

 

Since T could not go out, I would occasionally run an errand for him.  Shortly after our first meetings, he had to go to the hospital.  When I found out, I visited primarily to let him know that someone was thinking of him. I also kept up to date by talking with his mother.  T was also undergoing chemotherapy because he was not ready to “die.”  He was only in his early 40s and, in many ways his life was just beginning.  

 

While in the hospital he was able to create a living will and a power of attorney with the assistance of hospital staff and some encouragement from me. We talked some about Hospice services because the reality was that the chemo was not working and he needed to look to at what the next steps should be.  He was also in constant pain throughout which made the situation even worse. T went through several hospitalizations.  Each time he got weaker and eventually reached the point of going to Hospice. 

 

The good news was that he was released from house arrest and reestablished his relationships with his children.  After the last hospital stay, he was transferred into a nursing home and enrolled into Hospice, where, after just a week, he passed away. (You may recall from a previous article that Hospice services are primarily geared for non-hospital stays.)

 

I would like to think that our relationship helped make some positive difference in T’s last months. During our brief period of working together T reestablished relationships with his children, made provisions for taking care of his estate after passing away, enrolled in Hospice to make sure the end was as peaceful and comfortable as possible and gave him someone to talk with and who would think about him.

 

While it would be very presumptuous of me to take credit for these things, I do believe that it may have helped.  I certainly try not to take things for granted as perhaps I did and realize that someone to talk with is something most of us can use.

 

While our relationship started at a time when things were already problematic, I believe that such a process can be even more positive if started earlier; although it is never too late. There continues to be a belief that the general community still looks at HIV/AIDS as a problem not worthy of much attention leaving those with the problem potentially isolated and depressed and in need of a positive relationship.  It seems to me that the more support we can provide, the better off everyone is.

 

Currently, buddy training is offered periodically for those interested, yet there are very few new buddy pairings that exist.  The reasons for this are not clear, but in talking and thinking about it, several possibilities [but certainly not all] arise, including: (1) those with HIV/AIDS live longer with better medications and so don’t need support; (2) those with HIV/AIDS don’t want anyone to know. Regardless of the reason[s], one-on-one matches are rare. 

 

I believe that one positive step would be to meet with groups of clients to determine if there is a need/desire for maintaining a “Buddy” system and if so what the program should consist of.  If the general consensus is that the program is not needed than there is no point in training folks to participate in a non-functioning program. 

 

I should also point out that one does not and probably should not be a trained counselor to be a successful buddy – what you need more that anything else is to care and be willing to listen.

 

Anyone who has comments or questions about any of this is welcome to send them to Tony at HAVENinc@aol.com, or to me at hillardmh@aol.com, and I would be happy to respond in a future newsletter.

 

 

 

By Jason Stevens

 

In the United States, we tend not to think about diseases such as malaria, tuberculosis, and cholera; regarding them as illnesses endemic to developing nations.  And while malaria and cholera are not a local concern, tuberculosis plays such an important role in the worldwide HIV pandemic that it warrants our attention. 

 

In fact, TB is so closely associated with HIV that health professionals use the terms “co-epidemic” or “dual epidemic” to describe the present situation. 

 

While the current HIV/TB pandemic is largely isolated to rapidly developing nations, it is important that we, as a community, remember that tuberculosis is the leading cause of death among HIV-infected individuals worldwide.    

 

How big of a threat is TB?  According to the World Health Organization, TB infections currently spread at the rate of one person per second.  Every year 8–10 million people contract the disease and 2 million die from it.

 

About a third of the world's population, or around 2 billion people, carry the bacteria that cause TB but most never develop the active disease. Only 10% of people infected with TB develop the active disease in their lifetimes, but this proportion is changing as HIV infections spread. 

 

Because HIV weakens the immune system, infection with the virus increases the likelihood of people acquiring a new TB infection. It also promotes both the progression of latent TB infection to active disease and can cause a relapse of the disease in previously treated patients. 

 

HIV-infected individuals co-infected with latent TB face a risk 800 times greater of developing active TB disease than those without HIV.  It is estimated that one-third of the 40 million people infected with HIV are co-infected with TB. 

 

Adding to this health crisis is the emergence of what some are calling “Extreme TB.”  Officially referred to as “extreme drug-resistant tuberculosis (XDR TB)” this new strain of the bacteria is virtually untreatable.  In fact, neither the standard first-line drugs, nor at least three of the six classes of second-line drugs are effective against the disease. 

 

Though it is important to remember that XDR TB is an emerging disease, the 24 March Morbidity and Mortality Weekly Report noted that 347 individual cases had been reported worldwide.  Of those one was from Africa with the remainder mostly from Eastern Europe and Western Asia. 

However, late this summer an outbreak occurred in South Africa, with 120 patients in 28 hospitals diagnosed with XDR TB.  All of the patients infected with XDR TB were HIV-positive and nearly all died of tuberculosis within a matter of weeks.  

 

Among health professionals, there is great concern that XDR TB will continue to spread.  Such a possibility could have a devastating effect in sub-Sahara Africa given the fact that large numbers of the populations are infected with HIV. 

 

Unfortunately, there is little hope on the immediate horizon.  The non-profit Global Alliance for TB Drug Development estimates that the first drugs of an entirely new class will not be ready for use until 2012.

 

Bob Davis

Board President

703-841-4460 email: bdavis@caci.com

or: write to P.O. Box 514, Arnold, MD 21012

or: Diane or Tony can have him call you

 

Diane Goforth

Executive Director
(410) 544-2244

Tony Teano

Director of Volunteers & Client Services
(410) 224-2437

 

Vance Larson

Housing Director & Buddy Services Coordinator
(410) 672-7571

 

Sharon Dawson

Our House Resident Manager
(Reach through Vance or Diane)