Time for a HAART-to-HEART

Written by BLC guest blogger Rob Quinn

Along with Valentine’s Day and Black History month, February marks American Heart Month, a great time to open up the conversation around HIV and cardiovascular health. When someone fashioned the handy acronym HAART (Highly active antiretroviral therapy) in 1996, very little was known about long-term side effects, if any, or the connection between heart disease and HIV medications that we know today. Who knew HAART would put some people living with HIV/AIDS (PLWHA), especially long-term survivors, at a higher risk for HEART disease? One long-term PLWHA being me. This is my story.


At age 56, it has been 22 years since I was diagnosed HIV-positive, and 16 years since I was diagnosed with AIDS. I currently take fifteen medications daily, even having downsized over the years to only two pills for HIV. The rest of my prescriptions, a crowd of white-topped orange plastic bottles, are to treat the many ailments and conditions that are a result of aging with the virus, along with years of taking the sometimes toxic medications to treat it. Being a long-term survivor, I face a myriad of challenges rooted in HIV. My highest hurdle to clear right now is a recent diagnosis of HIV-associated cardiomyopathy and coronary artery disease. My cardiac cocktail consists of five medications daily–a flashback to my early days of HAART. My recent relocation back to Boston last fall was in large part due to my own need for the more intensive medical care and the support services to PLWHA, the latter including a peer-led long-term survivor support group.


In 1986, my Dad, at age 53, passed away suddenly and unexpectedly from congestive heart failure. My recent diagnosis of HIV-associated cardiomyopathy and coronary artery disease brought me back to 1999, a dark place in my life and when I was diagnosed with Kaposi’s sarcoma (KS), a strain of skin cancer common to AIDS patients. That year I suffered a heart attack related to chemotherapy treatment for KS. Just like back in 1999, I recently saw HIV as a death sentence again. What if I wasn’t HIV-positive? If I wasn’t a long-term survivor who took countless older generation HIV medications which we are now just seeing the side effects of? What if I were diagnosed HIV-positive today with access to the newer generation medications? My thoughts, although cognitive distortions and not rational, were real to me.


My cardiology team at the Institute for Heart, Vascular and Stroke Care at Massachusetts General Hospital in Boston recently recommended that I consider the strong possibility that I will need an implantable cardioverter defibrillator (ICD), a small device that’s placed in the chest or abdomen, in the very near future. Doctors use the device to help treat irregular heartbeats called arrhythmias. As a gay, HIV-positive man already dealing with body-image issues resulting from lipodystrophy and lipoatrophy, the thought of an ICD protruding from my chest was just too much for me to cope with.


Initially I wanted nothing to do with this potentially life-saving medical intervention. I was done! Many times on this journey I have asked myself, “when is enough enough?” After much trusted support from family, my healthcare team, friends and peers living with HIV/AIDS, I came to the realization and made an informed decision that it is in my best interest to proceed with the recommended ICD. If this technology was available to my Dad 29 years ago, I believe he would still be alive. I believe if my heart disease was found to be genetic, that I would have coped with this experience differently. I have known since losing my Dad that I was genetically at a higher risk for developing heart disease. However, it wasn’t until after genetic testing, thyroid testing and a second angioplasty to rule out additional blockages (all of which came back negative) that I was diagnosed with HIV-associated cardiomyopathy and coronary artery disease.


Heart disease remains the leading cause of death in the United States, regardless of HIV status. The good news? Heart disease can often be prevented when we make healthy choices and manage our health conditions. Prevention is the best medicine. So, regular monitoring by our providers of our overall and cardiovascular health should be part of our plan for living longer and living well. Getting on treatment for HIV is one of the best things we can do to stay healthy. Scientists say that newer antiretroviral drugs may be easier on our heart. If you are HIV-positive, check with your healthcare provider to find the best HIV medications for you. While we cannot control all of our risk factors for heart disease, there is a lot we can do to reduce our risk such as quitting smoking, improving our diet, exercising regularly and stress management. By setting small, achievable goals and tracking those goals, we can make a big and lasting difference in our health.


In closing, I again no longer see HIV/AIDS as a death sentence and believe that I can still live a long, healthy life if I commit to making a few changes and respect my heart condition. I have always been a non-smoker. Already having successfully overcome multiple high risk factors, including an alcohol addiction and morbid obesity, along with being virally suppressed for years, I am in a good position to reach my full potential and thrive in a meaningful, productive and connected life.


Living Positive with Purpose

This post was written by BLC guest blogger, Rob Quinn


In 1999, I was diagnosed with Kaposi’s sarcoma (KS), a form of of skin cancer common to people with AIDS. Having previously been diagnosed HIV-positive in 1993, I now had an AIDS diagnosis. Short turn disability ensued, turning into long-term disability when I suffered a heart attack related to chemotherapy treatment for KS.

I was not prepared for the darkness that followed. My professional identity stripped away from me, I lost the sense of life purpose I so valued and fell prey to addiction. In early 2007, during an appointment with my nutritionist, I remember her mentioning that I needed to become “accountable.” I knew at the exact moment in time that my nutritionist meant not only being accountable in terms of my nutrition, but being accountable in my life! The word “accountability” resonated with me; after trudging down a long, bumpy road, I became sober later in 2007. That was my turning point: the beginning of my recovery, the discovery of my resilience, and a reinvention of myself. I was starting to think about a life purpose to improve chances of a longer, healthier life.

In addition to the emotional and psychological benefits, having a sense of purpose is correlated with lower stress, better health outcomes and an improved overall sense of well-being. Maintaining a sense of personal control — even in the face of difficult situations — improves health outcomes. In this guest post, “purpose” refers to work–which includes work, work reentry, volunteerism and/or pursuit of higher education. I truly believe that we can all overcome and grow from life’s hurdles when we learn to see them differently.

New advances in HIV treatment have effectively made HIV a manageable chronic disease. People living with HIV/AIDS (PLWHA), like me, who maintain a positive outlook on our future, may manage stress better than those who do not, leading to improved coping behaviors and optimal health outcomes. Today, early diagnosis and powerful HIV drugs mean we are living long, healthy and productive lives. With proper care and treatment, many PLWHA lead normal lives, including work. Most PLWHA can continue working at their current job, look for new employment opportunities in their chosen field or even consider a career change. And with improvement in morbidity and mortality, PLWHA, including long-term survivors, are increasingly contemplating a return to the workplace.

However, despite compelling reasons for workforce (re)entry, a number of issues and concerns impact HIV-positive individuals transition from disability/unemployment to the workplace, and may actually contribute to overall declines in health outcomes. These issues may include disclosing one’s HIV status, the reality of HIV-related prejudice and discrimination, the fear of stress, and the challenge of balancing health, appointments, connection to services, identity and relationships.

In my opinion, the working HIV-positive community is an underserved community when it comes to accessing some services, particularly support services. Many local AIDS Services Organizations (ASO) currently operate weekdays, 9am-5pm, making it difficult if not impossible to access services. Although many of us may be virally suppressed, are retained in medical care and have stable housing – and are therefore not considered “vulnerable” – we do have needs. Because of this, do ASOs really know what the needs of this population in our community are if they never see or hear from us?

Recognizing this gap in services, The Boston Living Center’s (BLC) BLC Academy, a collection of workshops on job readiness, computer classes and a HiSET (High School Equivalency Test) test prep program for people living with HIV, will launch Working POZ. Working POZ is an evening biweekly peer-led (by me) support group for HIV-positive people to talk about balancing work, health and identity. The group meets the 2nd and 4th Monday of every month starting February 22nd from 6:00-8:00pm, with dinner being served from 6-6:30pm. To sign up or for more information, call/text (857) 400-9052, email: mphillips@vpi.org, or stop by the BLC front desk.

Working while living with HIV/AIDS presents its own challenges, but for those of us who can, it pays off—and not just in the bank account. People who live with purpose are able to find meaning in the things that happen to us…hence my reinvention as an HIV/AIDS activist and educator. With “my OCD”: not obsessive compulsive disorder, but rather Optimism, Confidence and Determination, I will continue to improve the quality of life in the HIV/AIDS community, including my own, by raising awareness and reducing HIV-related stigma.

How will you inspire a world of good?


Tia’s at the BLC: Part 1

Tia's pic    Hello, my name is Tia Murray. I am a highschool senior at a small charter school, Codman Academy. My school requires every student to complete two internships, one as a junior and the other as a senior. They believe it is important for students to go out and take on real jobs in order for them to learn how to be responsible. Also, as college is the next step in our lives, these internships give us an insight on what it would be like to join specific fields.

My mom inspired me and was the key factor in why I want to join a field such as social work. When I was younger, I struggled to cope with how little I saw her. As a single mother of three she was constantly working in order to provide us with everything we needed. She made no excuse, we were her priority. As a senior in high school, and still to this day, it amazes me how she was able to not only support us but have the time to give back. When we took family trips back to my birthplace, Jamaica, my mom always brought  barrels with her. Inside of these containers was cooking oil, rice, clothes, etc. She would then share it with the people who lived in our community on the island. My mom never forgot about where she came from. Even though she did not have a lot of money, she knew there were families who struggled more than ours.

I am at Boston Living Center shadowing Morrigan because I want to see what it feels like to be a social worker. I want to be able to take part in activities such as yoga and art in order to get to know the members more. I believe everyone one has a story and a purpose and it would be a pleasure to be able to build relationships within this community so that I can learn more. An experience like this will never be forgotten, it is a step in building my future.

I have only been here for three days but I have learned so much. The first day was more informational. I read articles on HIV and was introduced to the staff. The second day I felt like a businesswoman, traveling from one location to another for meetings. I really appreciated having the opportunity to sit in on these discussions. The first group was representatives from different organizations coming together in order to discuss what they have been doing and different ways to get the youth more involved in the fight against HIV. My second meeting took place at Boston Living Center with the members from CAB (community advisory board). Apart from their humorous personalities, I was intrigued by their rigorous ideas on how to improve the program. The third day was more hands on than any other day because I was in the kitchen. I learned how to cut different vegetables and then was able to serve the food. During this time I conversed with the kitchen staff and volunteers where I got to know them on a more personal level.

Though I am only in my first week, I already feel some sort of acceptance and bond from the BLC community. I am excited and honored to continue to participate in activities and meetings in order to better understand this organization and its purpose.

Ending the MBTA as we Know It

Morrigan Phillips-- Prevention & Outreach Coordinator for the Boston Living Center

MBTA’s fare hikes and service cuts will drastically reduce public transit options to BLC members and others in our community.

When the MBTA announced their two proposals to try and fill the budget deficit in the coming year there was nearly unanimous public outrage. What the MBTA is essentially proposing is to drastically reduce the foot print of public transit in the greater Boston metro area and to make riders pay more for newly limited services.

It is true that the MBTA is in a dire financial situation. Up until 2000 the State Legislature would cover the difference between what the T raised in revenue and what its operating expenses were. When that relationship ended the State House cut the T loose promising one cent out of every five cents brought in by the state sales tax…this and $3.8billion dollars in debt. This debt is directly related to the mammoth Big Dig debt incurred by the State. When the State arranged for Federal Highway dollars to fund the Big Dig it also had to agree to fund mass transit improvements as well – something fairly standard in such deals. But now the T is on the hook for that portion of the Big Dig debt and now just as the State Legislature passed the debt burden to the T, the T is unfairly passing the burden onto riders. 

Both proposals on the table would drastically reduce bus service. Proposal 2 alone cuts 101 weekday  bus routes, 69 Saturday routes and 50 Sunday routes. And while more bus cuts means a less severe fair hike, T riders will still be paying between 30% – 40% more in fare. In addition to the bus cuts the MBTA is proposing to run no commuter rail trains on weekends or after 10pm on weekdays. Additionally weekend service on the Mattapan trolley will be ended as will weekend service on the Green Line E line trolley.  

The fare increases proposed mostly target the seniors and students. The senior TAP local bus pass will go up 83% to 95%. The student pass, which many high school students use, will increase by 100%.

Seniors and persons with disabilities who use the RIDE will also be hit hard by both proposals. For service in areas required to be covered by the ADA the price of the RIDE will go up as much as 125% and in non-ADA required areas by as much as 500%!

The fare increases will affect everyone. A monthly link pass will go from $59 to $78 for example. Many people use the commuter rail in the summer to go to the beach or other excisions. The cuts and fare hikes impacts on the most vulnerable in our communities are the most distressing.

Public transportation is a public good, which connects workers to jobs, shoppers to business and the community to each other. For low-income people, seniors and persons with disabilities and youth who cannot drive, public transportation is a way to get to school, doctor appointments, social services, community events as well as shelters and day programs. Without public transit this segment of our community faces isolation, missed appointments and reduced access to services and opportunities to participate in community events.

Programming at the BLC is grounded in the belief that just like regular medical check-ups and case management appointments are important to health and wellbeing so too is social support and community building. Our congregate meals, movie screenings, game days, yoga classes, support groups and even hair cuts and massages connect BLC members to a holistic system of services. It helps them to make friends, reduce isolation and become more active – all of which can boost the immune system and medication adherence.

By increasing fares and making drastic cuts to services the MBTA will limit vulnerable and struggling members of the BLC community’s ability to access not only medical care but also much needed fun and social time. Isolation is a big concern among those who live in shelters, single room occupancies as well as seniors and the chronically ill who live alone. The BLC works to offer a space where this isolation can be gently broken, offering people an entry into a healthy social world. Here members boost their immune system through peer support and nutritious meals. The MBTA’s proposed cuts will impact our member’s ability to access not only our services but those things services and other things like jobs and social events that the BLC’s staff and peers are helping to connect members to.

 An example of where the MBTA’s proposed cuts will impact BLC members a lot is with the elimination of bus routs 275 and 276 buses. These buses service the Long Island Shelter.  Many BLC members currently or have resided in the Long Island Shelter. It is there that these members have gained a footing and support to go out and find jobs in the community. With the cuts to these bus routes their ability to reach their jobs will also be eliminated.

Fare increases to the RIDE are another area that will hit BLC members hard. Many of our elderly, disabled and most ill members rely on the RIDE to get to and from our meals program and other services at the BLC.

 As the largest AIDS Service Organization dedicated to serving the HIV positive population the BLC is also a beacon of support for people in the greater metro area. These members ride in the on the commuter rail sometimes from as far away as Gloucester or Framingham. For these members the isolation is particularly acute since they live in areas with few HIV/AIDS resources for positive people. The raise in Commuter Rail fares and elimination of late night service will further isolate these members.  

There is no quick fix to the MBTA budget woes. But the two proposals on the table will only cover the budget deficit for approximately one fiscal year. Meaning riders and the T will be back in this same position this time next year. Considering that around the world public transit is funded as a public good by state and national governments and considering much of the MBTA’s budget problems are tied to debt incurred by the State it is time for the State Legislature and Governor Patrick to step up to the plate and solve the MBTA’s funding issues.

The MBTA is half way through their series of public hearings on the proposed cuts and fare hikes. On February 13th the T will hold a large public hearing at the Boston Public Library central branch in Copley Square. Riders from throughout the system will be coming in via train and bus to rally in front of the library before the hearing. The rally will begin at 4:30pm and the hearing will begin and 6:00pm. Please consider joining with the myriad of voices calling for No Cuts! No Hikes!

If you cannot attend a hearing you can send in a statement to the MBTA via:




Fare Proposal 
10 Park Plaza, Suite 3910 
Boston, MA 02116  

A Vegetarian at the Thanksgiving Dinner Table!

Turkey is a staple food on the Thanksgiving menu, but what happens if you are a vegetarian?!

Here are some healthy and cost effective alternatives to:

Mashed Potatoes
Pumpkin Pie
Cranberry Sauce


Vegan Stuffing

10 cups 1/2 inch bread cubes from 1 lb firm whole wheat or other sandwich
2 Tbsp olive oil
1 Tbsp minced fresh garlic (2 – 3 cloves)
1 cup finely chopped onion
1 1/2 cups finely chopped celery
1/2 cup minced fresh parsley
1 tsp dried rubbed sage leaf
1 tsp dried thyme leaf
1 can vegetable stock

Stuffing Directions:
• 1. Preheat oven to 400 degrees. Oil a large shallow casserole dish
• 2. Toast bread cubes in a large baking sheet in the oven until golden
brown. Set aside in a large bowl
• 3. Turn oven down to 350 degrees F
• 4. Heat 2 Tbsp olive oil in a large skillet on medium heat. Sauté onions,
garlic, and celery until soft
• 5. Transfer the veggie mixture to the bowl of bread crumbs
• 6. Add parsley, sage, thyme
• 7. Stir until everything is well mixed
• 8. Add 2 cups vegetable stock, and stir until it is absorbed. Add more stock
as needed so that the mixture is moist and clumping together, but not soggy
• 9. Bake in a covered shallow casserole or baking dish for 25 minutes

Recipe adapted from:


Roasted Rosemary Potatoes
Yield: Serves 10 (serving size: 2/3 cup)
Total: 42 Minutes


• 1 tablespoon chopped fresh rosemary
• 2 tablespoons olive oil
• 3/4 teaspoon kosher salt
• 1/2 teaspoon black pepper
• 3 shallots, thinly sliced
• 2 pounds potatoes, halved lengthwise (about 6 cups)
• Cooking spray
• 2 teaspoons minced fresh chives

• 1. Preheat oven to 425°.
• 2. Combine first 6 ingredients in a large bowl, tossing to coat. Arrange
potato mixture on a foil-lined jelly-roll pan coated with cooking spray. Bake at
425° for 27 minutes or until potatoes are tender, turning after 15 minutes.
Sprinkle evenly with chives.

Recipe adapted from: http://www.myrecipes.com/recipe/roasted-rosemary-potatoes-50400000116755/


Mashed Potatoes:

6 servings, about 2/3 cup each
Total Time: 40 minutes

• 1 pound Yukon Gold potatoes, peeled and cut into 1 1/2-inch chunks
• 1 pound sweet potatoes, peeled and cut into 1 1/2-inch chunks
• 1/2 cup low-fat milk
• 2 tablespoons butter
• 1 teaspoon brown sugar
• 3/4 teaspoon salt
• 1/4 teaspoon freshly ground pepper

1. Place potatoes and sweet potatoes in a large saucepan and add enough
water to cover. Bring to a boil over high heat and cook until very tender when pierced with a fork, 20 to 25 minutes.
2. Drain the potatoes, then mash them in the pot to the desired consistency. Place milk and butter in a small bowl and microwave on High until the butter is mostly melted and the milk is warm, 30 to 40 seconds. (Alternatively, place in a small saucepan and heat over medium until the milk is warm.) Stir the milk mixture, sugar, salt and pepper into the mashed potatoes until combined.

Recipe adapted from: http://www.eatingwell.com/recipes/yukon_gold_sweet_potato_mash.html

Pumpkin pie:

Crustless Pumpkin Pie (Weight watchers recipe)

Serves 8

1 can pumpkin (15 oz)
1 can evaporated skim milk (12 oz)
3/4 cup egg substitute (or 3 egg whites)
1/2 tsp salt
3 tsp pumpkin pie spice
1 tsp vanilla
2/3 C. sugar (or splenda)


Combine all ingredients and beat until smooth
Pour into a 9″ sprayed pie pan
Bake at 400 for 15 minutes, and then at 325 for 45 minutes or until a knife inserted in center comes out clean.

Recipe adapted from: http://www.healthdiscovery.net/recipes/desserts/pumpkin_pie.htm

Pumpkin pie:

Yield: one 9-inch pie, 6 to 8 servings

• 2 cups well-baked and mashed butternut squash or pumpkin
• 3/4 cup silken tofu (about half of a 12.3-ounce package)
• 1/2 cup granulated sugar
• 1 teaspoon cinnamon
• 1 teaspoon pumpkin pie spice (or equivalent of nutmeg, allspice, and ginger)
• 9-inch good quality graham cracker or whole grain pie crust


Preheat the oven to 350 degrees.
Combine the pumpkin or squash pulp in a food processor with the remaining ingredients (except the crust, of course). Process until velvety smooth.

Pour the mixture into the crust. Bake for 40 to 45 minutes, or until the mixture is set and the crust is golden. Let the pie cool to room temperature.

Cut into 6 or 8 wedges to serve.

Recipe adapted from: http://www.vegkitchen.com/recipes/special-occasions-and-entertaining/easy-vegan-pumpkin-or-squash-pie/

Cranberry sauce:

Spiced Cranberry Sauce
Yield: Makes 8 servings (serving size: 1/4 cup)


• 1 (12-ounce) package fresh or frozen cranberries, thawed
• 1/2 cup dark brown sugar
• 1/2 cup water
• 1/4 teaspoon ground cardamom
• 2 (1/2- by 3-inch long) strips orange rind


1. Combine all ingredients in a saucepan over medium-high heat. Bring to a boil, stirring occasionally. Reduce heat to medium-low; simmer 10-12 minutes or until cranberries pop and mixture thickens.

2. Remove orange rind; set sauce aside to cool completely. Refrigerate about 2 hours or until well-chilled. (Sauce can be made up to 2 days ahead.)

Recipe adapted from:

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