A visit to Healing Our Community Collaborative (HOCC)

Healing Our Community Collaborative (HOCC) 

On October 18th the Community Health Intern, Amanda Schulte, and Nutrition Works Coordinator, Amber Hansen, attended the “Healing Our Community Collaborative” monthly meeting at the Old South Church at 645 Boylston Street with some of the BLC’s female  members. The topic of discussion was Breast Cancer and the importance of early detection and yearly mammograms for women over the age of 40.

The Healing Our Community Collaborative, more commonly known as HOCC, is a non-profit grassroots organization for women infected with, affected by, or at risk for HIV/AIDS.  HOCC was founded in 1997 by a small group of women who realized there was a deficiency in the support groups and services available specifically for women with HIV/AIDS.  These women decided to act upon their dissatisfaction and created the nurse-led and peer-driven community for women that exists today.  For the past 13 years, HOCC has been educating and empowering women by closing the disparity in gender specific HIV/AIDS programming. 

Every month HOCC gathers for a meeting over lunch at the Old South Church at Copley Square to discuss issues important to the health of women with HIV or AIDS.  

This month the discussion focused on breast cancer.  A guest lecturer with an expertise in cancer came to the meeting and delivered a wide ranging presentation on the demographics of breast cancer, breast cancer prevention, early breast cancer detection, and the importance of yearly mammograms for women over the age of 40. 

A startling fact that was presented and further discussed by the women at the meeting was the disparity of breast cancer mortality rates among African American women compared to white women.  This shocked many of the women in attendance because the majority of women with breast cancer are white; however, there are more deaths due to breast cancer among African American women.  The cause of this discrepancy, according to the presenter, is that white women tend to catch tumors earlier in the course of the cancer than African American women.  This could be due to greater accessibility of mammograms and other early detection services for white women than African American women.  There are greater chances of survival of breast cancer when it is detected in the beginning stages because effective treatments can be used to slow the growth before the cancer can spread to other areas of the body.

Self-breast examinations and yearly mammograms are important tools for catching cancer in early stages.  Mammograms are can be scheduled by an individual without the need of a doctor’s prescription.  During the meeting, many women voiced concern and fear of mammograms.  Some were afraid mammograms are too painful or expensive, while others feared the results the exam might report.  Ultimately, every woman at the meeting over the age of 40 who had never before had a mammogram vowed to schedule an appointment within the next six months.  The women agreed the potentially life saving benefits of this exam outweighed their other fears. 

One HOCC member gave her personal story of her battle with breast cancer and encouraged all the women present to take action early and to take control of their bodies.  Taking preventative measures against breast cancer can be a very empowering action for women who may otherwise feel like their bodies too often control them.  In addition to early testing for breast cancer, other measures to prevent the start of cancer were emphasized such as weight control through diet and exercise, smoking cessation, and limited consumption of alcohol.

 For women who are interested in finding a location to schedule a mammogram: A good resource is the Women’s Health Network in Boston.

 “The Women’s Health Network (WHN) is a program of the Massachusetts Department of Public Health. WHN provides free breast and cervical cancer screening, diagnostic services, and health education to low income, uninsured or underinsured women. These services are provided at local health centers, hospitals, and community agencies throughout Massachusetts.”- http://massmammography.com/aboutus.php

Contact Information

Women’s Health Network
Department of Public Health
250 Washington Street, 4th Floor
Boston, MA 02108-4619
Information and Referral: (877) 414-4447 | (617) 624-5406
Languages: English, Spanish, Portuguese
TTY: (617) 624-5992 |  Fax: (617) 624-5505
Email: DPH.WHN@state.ma.us
Web Site: www.mass.gov/dph/fch/whn/

Blog authored by: Amanda Schulte, Boston Living Center Intern


Hue Gioi-Meditation Class Volunteer

Recently, Volunteer Coordinator for the BLC, Lisa Brown, sat down to interview Hue Gioi, a practicing Buddhist monk about his volunteer experience at the Boston Living Center.  Hue Gioi has been offering meditation classes at the BLC on Tuesday afternoons for the past few weeks.

Tell me a bit about your choice to become ordained as a monk…

I was inspired by my sister.  She had a little bit of a wild side, and after college she moved to Hawaii.  She had this long beautiful blond hair, and when she came back she had shaved her head.  She was really different, she was centered and strong and she had been practicing meditation.  I was about 16 at the time, and it had a big effect on me.  I used meditation for about six years to support my acting, before and during college.  I wanted to be an actor because I was interested in people.  While acting and meditating I became more and more interested and just before I was going to head to LA to pursue my acting career, I decided to go on a retreat to find out who I was.  I had met a monk who embodied what I had been studying and practicing.  I was going to be on my retreat for three months and that turned to six months, and I realized it takes a lifetime.  I found this life very fulfilling and decided in about six months that I wanted to become ordained.  I’ve been a practicing monk for almost six years now.

Why did you choose to offer your skills to the BLC?

I had wanted to volunteer, and as a child I had been sick a lot and in the hospital repeatedly with illnesses, being ill had been a big part of my life.  While I was in Burma I contracted typhoid in the jungle and had to be rushed to the hospital alone from the monastery.  There had been a cyclone and the hospital was very rustic and had no windows, allowing in rain and flies.  Food was not provided by the hospital; a monk had come to stay with me and slept on the floor.  However, strangers offered their help to me bringing food, some ladies came by to sing to me and rub my feet. I also helped myself by meditating, it’s a great way to help become calm and it’s an easily learned skill. I promised myself to help others in similar situations. 

 How long have you been practicing and teaching meditation?

I’ve been practicing for about Four years and teaching for about two years.

 Why is meditation beneficial for someone living with HIV? (also see video http://www.youtube.com/watch?v=oZi9XL1mbpg)

Well putting aside the fact that someone who has HIV; meditation can be helpful for anybody who is under any stress. It helps you to be able to center yourself, to come back to yourself, and to calm down in many kinds of difficult situations.  Specifically with people with HIV or sickness- any other illnesses…Meditation has been shown in different studies recently to boost the immune system, and to elevate your mood, and I think these are two factors that play a really important role, not just…you know, in keeping somebody healthy but in somebody’s quality of life. And I think that’s what I’m interested in helping…because I can’t do it, I can’t meditate for somebody else, but helping others to kind of help themselves and enriching their quality of life.

What do you enjoy most about working with the membership of the BLC?

 The overall support and care and appreciation within the staff- and members are also appreciative, and there is an earnest…honesty of trying something new and different.  There is a mutual respect throughout the center- everyone helps everyone- teacher, student, staff and guests.

Anything else you want people to know about Buddhism or Meditation?

If there is one thing I want people to know it’s that- no matter race, or religion, or beliefs, you can practice meditation to deepen your religion or your knowledge of self.

Hue Gioi Volunteer Buddhist meditation teacher

A Personal Take on Crystal Meth and Positive Prevention

By Jos Greene, BLC Intern

In the age of Google as a verb and Wikipedia as a cited source in college papers, we sometimes overlook the knowledge of people around us.  Articles and websites can offer technical information, but we shouldn’t close ourselves off to the wisdom of lived experience and thoughtful reflection.  This week I sat down with Wayne Callahan, BLC member and Member Services staff, who was generous enough to offer his insight on crystal meth and HIV prevention.


J:  I know you’re very passionate about raising awareness around crystal meth use and HIV prevention.  Do you see that information available more widely?

In my community– gay, MSM, HIV-positive– I don’t hear enough dialogue about positive prevention and crystal meth.  In the U.S.A., the infection rate for MSMs is the only transmission category that is increasing; I think the reasons have much to do with crystal meth use.  Personally, I’m HIV positive because I made poor decisions and engaged in health risking behaviors while using crystal meth.  Sadly, I didn’t do anything about it for 8 years until I became gravely ill and I decided to start valuing my health and taking better care of myself.

I hear and see many prevention messages targeted for HIV-negative persons; however, I don’t hear or see enough messages targeted for HIV+ persons.  I would like more messages targeted to “containing” the virus, however controversial those messages might be.  I engaged in many risky behaviors when I first became HIV-positive and I continued to use crystal meth.  Those behaviors were risky not only to my health but also to the health of my partners.  Much like there is ‘combination’ therapy for HIV medications, I believe a continuum of prevention messages, targeted to both HIV-negative and HIV-positive persons are needed.

J:  Could you address the effects of crystal meth use on the body when someone’s HIV-positive?

Crystal meth use speeds up the HIV replication rate.  I didn’t know that for eight years.  I think people generally understand that consistent use of crystal meth decreases the healthy functioning of one’s immune system– weight loss, decreased appetite, poor sleeping etc.   While using crystal meth, what little nutrition I had was just washing through me.  But speeding up HIV replication?  I never thought about that.

It’s harder to remember to take medication if you’re high.  Doctors generally think that with HIV meds you should be 95% compliant.  One missed dose a month equates to 3%, so two missed doses a month and doctors begin to think about developing resistance, perhaps to an entire class of HIV meds.

J:  Do you see crystal meth use posing risks to mental, as well as physical, health?

My use of crystal meth absolutely increased my social isolation.  What initially was a socially ‘lubricating’ drug eventually became a socially isolating drug… just me alone with crystal meth.  I remember having a pattern of many more conflicts with people while I was coming down from a crystal meth binge.  Today, I don’t have any of those conflicts.  Crystal meth use gets in the way of so many things.  I feel comfortable here at the BLC and I have strong and safe relationships here.  When I was using and I didn’t have a community space like the BLC available to me, I was having an irrational abundance of sex, but there wasn’t significant intimacy… just bodies banging into one another.  I don’t hear much about persons dying directly from a crystal meth overdose; however, I do understand that the risk of suicide for a crystal meth user is high.  After a binge I would feel bleak and lonely.  I thought there was no way out of the mess that was my life.

HIV and Nutrition

By Jos Greene, BLC Intern

I sat down this week with Amber Hansen, the new Nutrition Works Coordinator, to chat about the program and why diet is so important to providing your immune system and physical health with maximum support.  Nutrition Works is open to BLC members with an income of $992/month or less and it is one of the most utilized programs the BLC runs

J: Members who participate in Nutrition Works love the program, but those who aren’t involved might not have a sense of its purpose and how it works.  Could you give us an overview?

A:  Nutrition Works is a collaboration between the BLC and the American Red Cross of Massachusetts Bay at their center Wednesday and Saturday 1:30-3:00.  The program is available for members based on income and it allows members to come to the pantry to pick up groceries and, at the same time, attend a workshop with a nutrition focus.  I’ve taught the workshops the past few times, but dietetic interns will lead a couple of them, so there’s some mixing up, which I always think is nice.  I’m trying to keep the workshops seasonal, so I did one on exercising in the heat and good hydration.  I’m going to do one on farmers’ markets and how to access them if you’re on food stamps.

I want the workshops to be targeted to low income individuals.  There are so many important issues to address- how to prevent food spoilage to make food last longer, specific recipes to work with bulk items you’ll be getting at the pantry every time, how to find the best deals on healthy food when you’re working on a budget.

The goal of the program is to give people healthy food and provide workshops to explain the rationale behind that.

J:  It sounds like Nutrition Works is trying to think beyond just providing food and provide the right kind of food.  There are some general rules of thumb for healthy eating, but when you’re thinking about nutrition for someone who is HIV-positive, what specific issues would you address?

A:  There are all sorts of issues that affect someone’s health: their HIV status, social history, access to food, income level, literacy level if I’m providing educational materials that are written.  You have to consider the big picture when you’re thinking about what would be best for someone’s nutrition and overall health.

Some people may be dealing with wasting syndrome and need to consider weight management.  Bone health and dental health have a large impact.  Then people have questions about supplements and food-medication interactions.  Medications have side effects—loss of taste, gastrointestinal problems like diarrhea, metabolic complications—and those affect nutrition.  Lipodystrophy, a redistribution or build-up of fat, can be a concern for people.  You can’t always change that with nutrition, but it’s good to think about, because the fat affects insulin (your ability to regulate blood sugar).  Heart disease is also an issue where a lot of research is emerging.  It’s important to keep up, because research is always changing and we’re learning new things

J:  People may be worried that they don’t have enough cooking skill, time or energy to prepare meals at home.  Does the program address that concern?

A:   The hope is that we’ll do that by providing recipes specific to food we’re giving out.  Recipes that people can actually use.  A couple members who have a lot of cooking skill themselves have suggested making a cookbook with recipes they’ve created.  Putting together something to hand out would be great.

The reality of the food system the way it is means that people eat a lot of processed food and we give some of that out.  Canned vegetables are convenient, but a tip with that would be to wash them off first because they can be really high in salt.  Luckily we have the option to give out fresh stuff too.  The Canned Food Alliance website has a lot of recipes and a healthier take on using canned food.

One of my goals for the summer is to restart the Operation Frontline classes.  They’re six week sessions of classes where people get a bag of food based on recipes we use in the class.  They’re super easy recipes and people can take them to use with the food when they get home.  The sessions are co-led by a chef and a dietitian, so I would teach about nutrition and the chef would pass on the cooking skills

J:  Many AIDS service organizations have been expanding their prevention, treatment, and care plans to fully address the interplay of aging and the various stages of HIV.  When you think about nutrition for HIV-positive people, how does age factor into the equation?

Because medicine has progressed, people are living longer, which presents new challenges.  I’m counseling patients who are facing chronic illnesses like high blood pressure, cholesterol, diabetes, illnesses that weren’t always as relevant to this population.  There used to be an exclusive focus on nutrition to deal with wasting syndrome; people were just trying to put on as much weight as possible.  But now they’re facing chronic illnesses and that requires a more complex nutrition plan to address healthy living as a daily practice.

J:  Sometimes a lot of educational information can be overwhelming.  Could you offer some key take-away points for people to consider when thinking about their nutrition?

A:  I feel like nutrition is so specific to the person and I really like to meet people where they are in terms of making nutrition changes.  Not everything’s going to work for everyone.  In general I’d encourage the basics: a healthy diet, but enjoying the food that you eat, and balancing that out with some kind of physical activity.  That will help with weight maintenance, but it also releases endorphins to keep you happy.

Fruit and vegetables are important and Americans tend to be pretty bad about getting enough of them.  Of course, your access to fruit and vegetables can be income dependent, but there are many forms you can find them in. I’d emphasize that you can make positive changes on a budget.

J:  Thank you so much!  Any last words you’d like to share about the Nutrition Works program or nutrition more generally?

A:  Anyone interested in Nutrition Works can come fill out an intake with me or another staff member in Member Services.  It really is a great program, because you not only get healthy food, you also get the skills and recipes in the workshops to use the food in everyday life.  Changing habits is hard.  The pantry provides a structural change (the food’s great!), but we’re also there with people to help them change their habits.

HIV and Crystal Meth: Beyond Just Primary Prevention

By Joss Greene, BLC Intern

Public health education about HIV and IV-drug use must be expanded beyond risks of transmission.  While researchers promote more comprehensive, lifestyle-oriented models for studying HIV/AIDS, many continue to isolate the topic of crystal meth use to conversations around primary prevention.  HIV positive people face considerable health risks if they are crystal meth users, and information about those affects should be more widely circulated.

A 2007 report from the Multicenter AIDS Cohort Study showed that men using meth and poppers who had unprotected receptive anal sex with one partner had a 2.71risk rate relative to men who didn’t use the drug; men who had unprotected sex with 5+ partners had a 13.57risk rate.[1] This study leaves too many variables unaddressed to conclude meth diminishes CD4 count or speeds up HIV replication, but scientists analyzing the interaction between meth and HIV at a chemical level have supporting evidence.

In 2009 a New York-based research team explored the effect of meth on the rate of HIV replication and determined that while further tests must be done, crystal does appear to hasten the progression of HIV.  Adding meth to test tubes with immune cells produced a marked increase in HIV replication, particularly in CD4 cells.  When HIV-infected mice were given crystal, a segment of the HIV genetic code was switched on and began producing tumor necrosis factor alpha, a protein linked to accelerated HIV disease progression.[2]

Some speculate that the correlation between meth use and increased HIV disease progression is due to lifestyle factors.  Meth users may have more difficulty sleeping, eating properly, or maintaining a routine.[3] A decline in healthy living habits has been linked to weakened immune system and may contribute to accelerated HIV progression.  An additional component of living healthy with HIV is commitment to medication.  Users who have difficulty following a schedule may struggle with adhering to their medication regimen and compromise their health in this way.

Crystal meth use compromises healthy living practices and recent research suggests that crystal may have a direct influence on the rate of HIV replication.  It is, therefore, important for anyone who is HIV-positive and currently using crystal to address risks with a healthcare provider.  If you are HIV-positive and want to reduce or stop your crystal meth use, you’re in the right city! Many organizations in the Greater Boston area provide assistance with addiction and several have distinguished themselves for attentiveness to the needs of HIV+ people:

Fenway Health offers acupuncture detox and multiple support groups, as well as their New Champions program which provides peer support and referral services to gay and bisexual men struggling with meth addiction.

Victory Programs offer a range of recovery services with a focus on residential alcohol and addiction treatment programs.

Crystal Meth Anonymous hosts meetings to offer peer support staying clean and discuss challenges of recovery.

[1] Michael Carter, “Gay men who use methamphetamine have greater risk of HIV seroconversion,” AIDSmap, May 29, 2007.  <http://www.aidsmap.com/en/news/62AA3D55-32FE-41B4-9C6D-3C7E8042E6B4.asp&gt;

[2] “Crystal meth accelerates HIV reproduction,” AIDSMeds, November 9, 2009.  <http://www.aidsmeds.com/articles/hiv_crystal_meth_1667_17533.shtml&gt;

[3] “Methamphetamine,” AIDSmap, June 4, 2010.  <http://aidsmap.com/cms1045235.asp&gt;

Program Preview: Tracy talks Beaded Jewelry

By Joss Greene, BLC Intern

This past week I sat down with Tracy to talk about her involvement with the beaded jewelry class offered Tuesdays at 1pm at the BLC.  This class is open 6 members, and you’d better sign up at the front desk in advance if you want to get in on the highly popular program!  Tracy has been attending the class for one year and calls it one of her favorite aspects of the center.

J:  You’ve made this class a key part of your weekly schedule and it’s obviously important to you.  Why did you start coming and why do you keep coming back?

T: I look at it as therapy, stress and harm-reduction therapy.  This is what helped me to come back out my door, what I needed for motivation to want to leave my house.  I made a commitment to be here… to myself and to the people here.

J:  What is it about the class that draws you in?

T:  I got a lot of support in this class.  When people found out about what happened to me, people were very loving, especially the instructor.  If you don’t come to a class, the next time she sees you, she gives you crap, like “Where you been?”  It’s more than she gives you a hard time, you know she cares.  It’s very important when you feel like your independence has been stolen.  Not only did I feel completely disrespected, but I felt my self worth was taken… When I come here, I know I’m supported no matter what I’m doing.  There’s always someone to talk to and tell me I’m a good person.

J:  The instructor sounds great.  How does her presence affect the class environment?

T:  She’s absolutely fabulous.  If we didn’t have her I probably wouldn’t keep coming back.

J:  Instructors can definitely set the tone for a class.  Once you’re here, what is it like to create art?

T:  It’s discovering my own unique talent that I never knew I had.  My mother’s my muse.  Pretty much any piece I create has my mother’s influence in it.  I draw a lot out of our heritage and put it in my creation…  I never have a plan for what I’m gonna make.  It’s the energy from the stones that draws me to them.  That’s the exciting part too, because I never know what’s going to be what.

J:  Not everyone gets a chance to attend this class or any of our art classes.  If someone wanted to know what you get from the class and why it’s important to you to have it offered, what would you say?

T:  I feel like I’m a part of something special.  It’s a sense of accomplishment, a sense of pride.  The first piece I made was really ugly.  If it wasn’t for one of the other members in this class encouraging me, I probably wouldn’t have come back.  Someone else saw the specialness in it that I didn’t see.  That was important… Family support is hard to come by.  This is my second family.

Rooting out the looter: Managing HIV and Hepatitis C

By Joss Greene, BLC Intern

If your body was a ship and you were the captain, the hepatitis C virus (HCV) would be the looter in the storeroom secretly smuggling your supplies overboard.  You might not notice him unless you stop to check the storeroom; after all, everything looks fine on deck.  But, left to his own devices, he can wipe out a lot of the supplies you’re going to need later on.

If you’re living with HIV/AIDS and are carefully monitoring your body you can catch opportunistic infections when treatment is most effective.  But not every infection makes its presence known.  Hepatitis C, asymptomatic in 75% of cases, is like a covert looter and it can seriously damage your liver without clear indications that it’s doing so.  HCV is particularly important for people living with HIV/AIDS to watch out for, because the viruses share many routes for transmission.  HCV is primarily spread through direct contact with blood through the sharing of needles and mother-to-child transmission.  There’s also a low risk of HCV transmission through sexual contact, body piercing or tattooing.  Health organizations like the National Association of Social Workers are increasingly calling for a combined approach to HIV and HCV.  Their focus on co-infection arises from developing knowledge of these shared routes of infection, as well as staggering data that estimates that 40% of people who are HIV positive and 60-90% of HIV-infected injection drug users may be co-infected with HCV.

HCV may be asymptomatic for the majority of people, but it’s far from harmless.  Hepatitis is the term for any kind of liver irritation or inflammation and HCV is a viral liver infection.  For those who do develop symptoms, HCV can cause jaundice (yellowing of the skin and eyes), fatigue, dark urine, abdominal pain, loss of appetite, and nausea.  In the long term, chronic infection can cause cirrhosis (liver scarring), muscle wasting, ascites (an accumulation of fluid in the stomach area) and/or liver cancer.

Your liver is one of the most important organs in your body, so HCV is dangerous on its own.  But HCV poses a particular risk for people living with HIV.  Some research has shown that HCV can speed up the course of HIV disease progression.  Co-infection with HIV, which weakens your immune system, can, in turn, accelerate the development of HCV-related liver disease.

Having a high functioning liver is crucial to living healthy with HIV, since it eliminates toxins from the body, converts sugars to body energy, secretes bile to aid in food digestion, and is one of the body’s main sources of heat.  The good news is that HCV can be treated successfully if you catch it early on.  In the case of co-infection with HIV and HCV, you should talk through the risks and benefits of anti-HCV therapy with your healthcare provider.  Doctors advise against starting therapies for HIV and HCV at the same time, as many drugs used to treat HIV have liver disease as potential side effects.  Generally, researchers encourage treating HCV first, with the hope that lowering HCV levels increase the likelihood of a strong anti-HIV response.  Regardless of your decision about medication, you can avoid further liver damage by avoiding alcohol and injection drugs, getting vaccinated for hepatitis A & B, and eating a healthy diet.

But the first step is finding out what you’re working with!  You can get tested for HCV through an ELISA blood test similar to the one used to diagnose HIV infection.  If you test positive, your doctor can do a liver biopsy to evaluate liver damage and advise you on potential therapies.  If the test is not positive, consider checking back in three to six months (like HIV, HCV antibodies may not appear immediately after infection).  Either way, think about steps you can take to protect yourself and others.  By reducing needle sharing and following safe sex practices you can prevent the transmission of HIV and HCV.  By treating HCV early on you can keep your liver high-functioning and take control of your health by learning all your options.

You’re the captain and if you act now you can root out the looters attacking your storeroom.  Learn your hepatitis status, talk to your healthcare provider about your results and treatment options, and keep your body going strong.

For more information”