Desert AIDS Project Community Action Newsletter 
September 26, 2013

Fighting HIV Stigma

Editorial Staff

David Brinkman

Chief Executive Officer


Barry Dayton

Director, Marketing & Communications


Alexis Ortega

Integrated Communications Associate


Steve Bolerjack

Senior Editor  


John Lewis

Volunteer Co-Editor


Eric Jannke

Volunteer Co-Editor 


In this Issue
Save the Date
Health reform and Covered California
Drug-resistant gonorrhea threatens
Kidney transplant between HIV-positive people
Update on tenofovir
Update on single-pill therapy
New vaccine for herpes
UCSD study on HIV, brain and aging
HIV generation gap?
Administration on healthcare and LGBT community
ADAPs address HIV-HCV coinfection
Getting past HIV stigma
Boycott Barilla pasta!
"The Normal Heart" comes to Los Angeles
Marilyn extends stay
Rick Vila steps down from DAPCAN
Benefits, resources, and discounts
Save the Date
Tuesday, October 1, 6:00 PM 
Positive Life Series: New healthcare changes and what they mean for you and your insurance needs 
Open enrollment under the new Affordable Care Act (ACA) will begin on October 1, 2013 (but that's not a deadline for signing up!). Learn how the new healthcare options may affect you, along with changes to the Ryan White CARE Act, Riverside County Health Care and other programs.   Positive Life presentations are always on the first Tuesday of each month at the Sinatra Auditorium of Desert Regional Medical Center (corner of Tachevah and Miraleste).  A light supper is served at 6:00 PM, and the program begins at 6:30 PM.  ASL provided.  Email [email protected] with any questions.  You need not RSVP.  This will be one of our most important programs, covering new insurance issues that will affect everyone for many years!  (rv)    

Future programs:
Nov. 5:  HIV and kidney health, with Dr. Ruben Gamundi
Dec. 3:  Aging well with HIV
Saturday, October 19, 8:00 AM
Desert AIDS Walk draws near!
Now in its 26th year, the Desert AIDS Walk is a grassroots community event supporting HIV and AIDS services, prevention, and advocacy at Desert AIDS Project. This year the Desert AIDS Walk will benefit both D.A.P. and the dozens of community partners collaborating with us on Get Tested Coachella Valley, a new regional campaign dedicated to dramatically reducing transmission of HIV. Join our fundraising efforts today. It's online, safe and Desert AIDS Walk 2013 easy. Create your own team or register as an individual.  Set your fundraising goal and collect donations from your colleagues, friends and family.  Check out our fundraising tutorials and templates; they'll make it simple to raise even more.  Click here for more information and to register.  (jl) 
D.A.P. Community Center
Desert AIDS Project's Community Center houses many activities and programs including arts and crafts workshops, bingo, movies, lending library and drop-in hours.  The Center also hosts educational programs and classes designed to increase health literacy and empower clients to participate more in their own care.   Click here for information about upcoming events at D.A.P.'s main website, and for details about next week's featured events.  If you would like to attend any of them, please RSVP to Ray Robertson  or feel free contact him about any of the following events listed below. 

Ray's contact information: 
760.323.2118, ext. 295 - phone 
Upcoming Community Center featured events:
Thursday, October  10, LUNCHEON! - 12:00 - 1:00 PM


weeklypills2 Speaker Jack Degnan will discuss Atripla and other HIV medications in a presentation and Q&A session.  Lunch starts at 11:45 AM.  Registered D.A.P. clients only. ASL interpreted upon request.  Sponsored by Bristol-Myers Squibb.  Contact Ray at least 48 hours in advance to RSVP.  

Learn as much as you can about your medications!

Mondays and Wednesdays, drop-in hours at 9:30 AM
PING PONG practice for upcoming TOURNAMENTS!
Come to practice sessions, starting in the DHD room every Monday and Wednesday.   It's a great way to have some fun and see how good you are with a paddle!  Watch DAPCAN for upcoming games and tournaments.

Coming soon...Stop smoking classes!
If you are truly ready to give up your nicotine addiction, this course may be the help, direction and support you have been looking for!  There are no scare tactics, patches, or medications involved.  Just safe and healthy techniques and positive support as you finally leave behind this increasingly expensive and unhealthy habit!  We'll do two one-hour sessions a week for four weeks.  Commit to make 2013 the year you stop and give it a try!  Facilitated by Ray Robertson, Certified Chemical Dependency Specialist.  Call Ray to get on the list so we can set up classes to best accommodated the group or with any questions you have.  You can even just show up show up for the first session!  Watch DAPCAN for further details.

Finally kick cigarettes out of your life!

Every Thursday, 1:00 PM, Movie & Pizza
October 3, Duplex (2003)

A young couple has a chance to move into a gorgeous duplex in the perfect New York neighborhood.  All they have to do is bump off the current tenant, a cute little old lady.  Starring Ben Stiller, Drew Barrymore and Eileen Essell.  Directed by Danny DeVito.

Come out for a good flick! 





Ongoing Community Center activities:

  • Support groups  
  • Hepatitis C therapy education
  • Diabetes education
  • Stitch in Time (needlecraft) - third Wednesday each month 
  • Community Center Computer Lab
  • Lending Library
  • Free films, Thursdays, 1:00 PM
  • Afternoon tea, Wednesdays, 3:00 PM 

New groups coming in October!

  • Cooking Classes: 2:00 PM, second and fourth Wednesdays;
  • Living Sober Support Group: 3:00 PM, first and third Tuesdays;
  • HIV and Aging Support Group: 10:00 AM, every Thursday;
  • Caregivers Support Group: 3:00 PM, second and fourth Tuesdays;
  • "Life Skills" classes: 2:30 PM, first and third Wednesdays  

Again, for more information on any of the above, please contact Ray Robertson at the above phone or email.  Check out the complete Community Center Schedule  for all programs, activities and drop-in hours.     

Learn to pick a healthcare plan via webinar and Covered California 

In addition to the Positive Life Series presentation noted above, there will be a webinar on Tuesday, October 1, 10:00 - 11:30 AM, to help answer questions about new health insurance plans.  On October 1, insurance marketplaces will reveal the plans they'll offer and people may also begin enrolling on that date.  But that's not a deadline!  There will be time to research and compare plans before enrolling.  To help you evaluate insurance plans, the Center for Health Law and Policy Innovation (CHLPI) of Harvard Law School has developed a health plan assessment tool to help you figure out which plans are particularly well-, or  ill-suited for people with HIV.  This webinar will enable you to use an assessment tool, describe steps in evaluating a plan and highlight key provisions that will maximize access to care, treatment and affordability.  It includes a workbook and worksheet for plans available in California (they vary from state to state).  Click here for more information and to register for the webinar.  And click here for Covered California's site, which includes state-specific plans and information.  (jl) (sb) 

CDC warns new drug-resistant gonorrhea is an "urgent threat"

This week, the Centers for Disease Control (CDC) issued its highest level of warning for a drug-resistant strain of gonorrhea, noting that the sexually transmitted disease is an "urgent threat" to the health of Americans.  It's a risk for anyone sexually active but has always been a problem in the gay community and is especially dangerous for those living with HIV.  Protect yourself and click here to read more.  (sb)     

First successful kidney transplant between HIV-positive individuals

kidneys Kidney health is a huge concern when living with HIV so recent news that Israeli surgeons have conducted a successful kidney transplant from one living HIV-positive person to another is very encouraging.  Transplants are complex in themselves and this one required long coordination of antiviral medications between the two individuals to guard against resistance and mutation.  Read more here.  (sb)    

Lower dose of tenofovir stays effective, may lessen side-effects

A new study at Harvard Medical school shows that a new formulation of the widely used antiviral tenofovir is just as effective at a lower dose with fewer adverse side-effects on kidney and bone health.  Tenofovir is a nucleoside reverse transcriptase inhibitor (NRTI) and is the sole ingredient of Viread, and a component of single-pill combination therapies Truvada, Atripla, Complera and Stribild.  How and when the manufacturers of these drugs may alter their products' dosages of tenofovir remains to be seen.  But if you are on any of these drugs, watch for developments and discuss the matter with your doctor on your next check-up.  Click here for the full story.  (sb)     

Single daily pill shown to improve adherence to antiviral therapy

This is no surprise: a recent study of veterans of antiviral therapy conclusively showed that they adhere to their regimen better when taking only a single pill daily.  This study group even had a lower hospitalization rate than another group that remained on multiple-pill therapy.  Atripla, Stribild and Complera are currently the only approved once-daily drugs.  Of course, switching meds is no light matter and obviously can be done only after careful consultation with your healthcare provider.  But if you have trouble remembering to take mulitiple pills or have other adherence issues, it's worth discussing with your doctor if a single-pill medication might be right for you.  Click here to read more on this study.  (sb)  

New vaccine may help fight genital herpes

Genocea Biosciences Inc., a Massachusetts biopharmaceutical company, recently reported positive results from a clinical study of a vaccine to treat recurrent outbreaks of genital herpes from simplex virus type 2 (HSV-2).  The vaccine apparently inhibits HSV's ability to "shed," or detach itself from one individual to another.  This happens most commonly during sexual contact, but also from mother to baby during childbirth.  The science is a bit complicated, but click here for the full story.  The nasty-looking genital herpes bug (pictured) remains a major STI problem in immune-suppressed patients.  (sb)  


Update on UCSD study on HIV, aging and the brain

Researchers at the University of California, San Diego (UCSD) are studying how HIV affects the brain, particularly among older HIV-positive individuals.  UCSD researchers are reaching out to the HIV community in the Palm Springs area who are interested in traveling to San Diego to complete a standard battery of cognitive and medical tests, and who are willing to agree to organ and tissue donation after death.  (This donation agreement is required to enroll and participate in this study, and for transportation to be provided.  If you are not willing to meet this requirement, UCSD researchers have other studies for which you may be eligible).  This study, known as the California NeuroAIDS Tissue Network (CNTN), is part of a larger national research program, the National NeuroAIDS Tissue Consortium (NNTC).  Together, these researchers use their shared knowledge and resources to develop uniform methods for studying HIV-affected populations with neurological disorders.  Additionally, the NNTC is a resource for HIV researchers around the globe.   Study participants will be compensated for their time, and transportation will be provided to and from the research center in San Diego.  Overnight accommodations will be provided as necessary.  If you are interested in learning more about CNTN, please contact Susanna Concha-Garcia at 619.543.5098 with any questions you have about travel or compensation.  Click here for the UCSD researchers' website.  (sb)    

Is there an HIV generation gap?

Many of us around the D.A.P. community are older gay men who have survived living with HIV for decades, some as long as 30 years.  We've done our best to pass along our stories and cautionary tales to younger men not even born when the epidemic began.  Now, we're hearing of spikes in new infections among guys in their twenties or even their teens, and may feel appalled and frustrated, much as all parents have felt with their children for all time.  Weren't you listening?! we may ask.  What were you thinking?!  Well, some of them are reflecting and appreciating what the rest of us have been through as they begin to face unexpected HIV issues themselves.  Despite becoming infected through ignorance, negligence or the callow nature of youth, HIV is being taken seriously in some quarters of the millennial generation.  Click here for one young writer's take in The Huffington Post.  (sb)  

Advocacy & Law

Obama Administration's statement on healthcare and LGBT communities
sebelius "Throughout the administration, we operate on the fundamental belief that every American deserves equal opportunity, equal protection and equal rights under the law," Kathleen Sebelius, Secretary of Health and Human Services, said recently.  "That's why the Affordable Care Act (ACA) is so important for LGBT Americans."  Sebelius noted that a new government website, Out2Enroll (click here) is specifically designed to help LGBT individuals navigate the new healthcare laws and options.  You can subscribe and receive regular updates.  For Sebelius' full statement on behalf of the Administration, click here.  (ej) (sb) 
ADAPs across country improve response to HIV-HCV coinfection

With all the data available on HIV, it's easy to overlook statistics.  But here's one from a new study from the Community Access National Network (CANN) that demands attention: about 25 percent of people in the U.S. infected with HIV are also infected with hepatitis C (HCV).  The study also shows HCV is more common among African-Americans and much more easily transmitted in sex between men than previously thought.  CANN is working with ADAPs around the country to improve prevention and especially availability of treatment of coinfection.  Click here to read more about their new combined approach.  (sb)  

Getting past HIV stigma

We've all been there: how do you tell a friend or family member that you are HIV-positive?   What will they think?  Will they embrace you or run away screaming?  Should you even try?  Steven Petrow, author of The Complete Guide to Gay & Lesbian Manners, recently addressed these questions in a Miss Manners-like column in The New York Times.  "The stigma that prevents many people with HIV from disclosing their condition is not just unreasonable, it's bad medicine because it discourages people from being tested.  Knowing one's status has immense benefits, in terms of early treatment and reducing transmission," said Petrow.  He cited new organizations, The Stigma Project and Needle Prick, aimed primarily at younger people, which are designed to diminish longstanding stigma about HIV disclosure.  Click here for Petrow's interview, here for the Stigma Project and here for Needle Prick (and its fun slogan).  (sb)  

Fifth Gay Men's HIV/AIDS Awareness Day passes quietly

This week marks the fifth annual National Gay Men's Awareness Day.  Most of us feel quite sufficiently aware of HIV/AIDS already, but appreciate that the government takes note.  There are so many other similar awareness days for all sorts of diseases, conditions, situations and about any conceivable circumstance that most pass without much attention.  Still, the day has potential to educate, especially younger gay men so we'll continue to put it out there.  Click here and here for updates.  And Human Rights Campaign has a good piece here about the special stigmas faced by gay Hispanic and African-American men.  (sb)  

Barilla pasta CEO to gay people: "We don't want your business"
Guido Barilla, head of Italian pasta giant, the Barilla Group, said on Italian radio this week, "I would never do an advert with a homosexual family...if the gays don't like it they can go an eat another brand."  We urge all DAPCAN readers to help him get his wish by never purchasing another Barilla product, which happens to be one of the biggest selling brands in the U.S. (which also means we've all probably eaten tons of it).  And to make sure his prejudices and utter lack of business sense are clear, he added, "I have no respect for adoption by gay families because this concerns a person who is not able to choose."  Boycott and dump Barilla products and tell your grocery store not to carry them!  There are plenty of other healthier choices and brands that appreciate our business.  (sb)  

Revival of Larry Kramer's The Normal Heart opens in LA

Over the next few weeks, area theatergoers have a chance to see The Normal Heart, Larry Kramer's classic 1985 play about the early years of the AIDS epidemic.  The Fountain Theatre in Los Angeles is presenting the first production of the play in this area in nearly 20 years.  The show opened this past weekend and runs through November 3.  It stars Tim Cummings as Ned Weeks, a New York writer (based on the playwright) who is spurred to indignant activism by the devastation of the epidemic.  Others in the cast are Bill Brochtrup, Lisa Pelikan, Verton R. Banks, Matt Gottlieb, Fred Koehler, Stephen O'Mahoney, Ray Paolantonio, Dan Shaked, and Jeff Witzke.  Simon Levy directs.  The Normal Heart is a landmark play about our own history and is worth attending if you've not seen it.  For showtimes, directions and tickets, call 323.663.1525 or visit fountaintheatre.com.  (sb)


Forever Marilyn update
A few weeks ago, we reported that the Forever Marilyn statue at the corner of Tahquitz and Palm Canyon in Palm Springs would be leaving us soon.  At the time, the iconic sculpture was indeed scheduled to move on.  But since then, negotiations with the owner have extended Marilyn's stay well into next year, enabling her to remain with us over the tourist and holiday seasons.  We hope she continues to bring many visitors (and their buying power) to downtown Palm Springs for months to come.  Whatever one thinks of its artistic merit, the statue has been a huge economic boost to downtown businesses.  (sb)
Editors' Corner

Appreciation: Longtime DAPCAN editor Rick Vila steps down
by John Lewis and Steve Bolerjack

Our friend and colleague Rick Vila, who has played a huge role in developing the scope and quality of DAPCAN, is stepping away as a regular volunteer editor.  Rick has volunteered at D.A.P. for 11 years and started working with DAPCAN in 2010.  In addition to his volunteer hours, Rick, along with his husband Ken Lyon, is also a member of Partners for Life, one of the Major Donor Programs benefiting clients of D.A.P.  We will miss Rick's dedication, hard work and easy writing style, but we're not losing him completely!  He promises to contribute an occasional column to DAPCAN and, we hope, a little extra help when we really need it.  We look forward to that and are deeply grateful to Rick for his incredible years of service.      

Benefits, Resources & Discounts

Discounted tickets courtesy of Palm Canyon Theatre  
As Palm Canyon Theatre celebrates its 16th anniversary as the only equity theatre in the desert, it is offering an ongoing special $20 ticket price to D.A.P. clients, staff and volunteers--a savings of $12. To get your tickets, call the Box Office at least two days before the show's first performance and mention D.A.P.   Click here for the theater's website and all you need to know about schedules and tickets.  (jl)
Gym discounts for D.A.P. clients                                                                             
Two area gyms offer ongoing  significant discounts  for D.A.P. clients.  World Gym at Sunrise and Vista Chino offers 20% off regular annual or monthly memberships.  And WorkOUT Gym on Via Escuela between Palm and Indian Canyon offers monthly memberships of just $20 to D.A.P. clients, employees and supporters.  Click here for World Gym's website and here for WorkOUT Gym's site.  Even with health issues, going to the gym for a light workout is a great way to get out, socialize a bit and get some exercise.  It always makes you feel better!  (sb) 
Positively Aware's online HIV drug guide    
palogo pills Check here anytime for the latest information about your antivirals: dosages, side-effects, interactions, classification, etc.,  courtesy of Positively Aware.  (sb)   

Dedicated phone line for RCHC HIV patient medications

The Warm Line, also  known as the Compliance Program Line,  is a separate phone line for Riverside County HealthCare's (RCHC) HIV patients to order refills and receive medications from Riverside County Regional Medical Center (RCRMC) pharmacy.  The number below enables patients to reach a special pharmacist to ensure they receive the medications needed.  Call: 951.486.4442, Monday to Friday, 8:00 AM to 4:00 PM, excluding holidays.  And allow two business days before picking up meds at RCRMC Pharmacy in Moreno Valley, and seven business days if mailed to a patient's home.  Voice mails are generally returned within one business day.  (rv) (sb) 
Help with Medicare
medcare7 The State Health Insurance Assistance Program (SHIP) offers one-on-one counseling and assistance to people with Medicare and their families.  This includes information about original Medicare, Medicare Health Plans, Medicare Prescription Drug Plans, Medicare Supplemental policies and Long-term Care Insurance.  The California Department of Aging (CDA) is responsible for statewide administration of SHIP, which is delivered through the Health Insurance Counseling and Advocacy Program (HICAP).  HICAP services can be accessed via a toll-free line at 800.434.0222.  The local HICAP counselor is located at the Mizell Center in Palm Springs and can be reached at 760.323.5689.  Follow this link for more information.
Centers for Disease Control's HIV website

cdchiv The Centers for Disease Control and Prevention's (CDC) website covers the latest HIV/AIDS science and public health information, as well as educational materials, policies and guidelines.  The site is a bit front-heavy on prevention but has portals to many other types of information.  Click through sub-sections for more on living with HIV, treatments, etc.  Click www.cdc.gov/hiv for the website.  (jl) (sb)

Help paying for prescription medications  

needymeds4 Among the resources available to HIV-positive people to help pay for prescription medications is NeedyMeds. The mission of NeedyMeds is to make information about assistance programs available to low-income patients and their advocates at no cost.  Go  to www.needymeds.org, look up the  medications you need and you'll be directed to the patient assistance program website for that manufacturer.  The site  also offers a free drug discount card that is accepted at more than 62,000 pharmacies.  If you are having trouble paying for your medications this site is worth a look!  

Help paying for private health insurance premiums
If you or someone you are close to is HIV-positive and paying for private health insurance,  there may be help in paying premiums. The California Department of Public Health, Office of AIDS (OA) administers the Health Insurance Premium Payment (OA-HIPP) Program.  OA has expanded OA-HIPP to make this program available to more individuals with health insurance who are at risk of losing it, and to individuals currently without health insurance who would like to purchase it.  You do NOT need to be a D.A.P. client to access OA-HIPP.  Follow this link to see if you qualify, and also check out the above links in the healthcare reforms article. (jl) (sb)  

Medically Indigent Services Program  (MISP) 

AIDS Drug Assistance Program (ADAP)      

CAADAP For those who qualify, medical care and help paying for your medications are available through the MISP and ADAP programs.*  Find out if you qualify: schedule an appointment by calling the numbers below.  You can schedule your MISP and ADAP appointments together for Moreno Valley office ONLY.  Call no sooner than four weeks before your ADAP qualifying expiration date (usually around your birthday).  If you qualify for ADAP only, the local ADAP office is right across the driveway, south of D.A.P., at the Palm Springs Family Care Center.  Specify the Palm Springs office when you call.  Here are the numbers:  

877.501.5085 - toll free                                                                951.486.5375 - English         

951.486.5400 - Spanish                                                               951.486.4635 - fax     


*NOTICE:   Faxed MISP/ADAP applications can get lost in the process.  It's best to apply in person in Moreno Valley, and get a "receipt of application," and use that as proof that you applied to avoid uninterrupted services with your D.A.P. medical doctor visits.  You should also follow up by phone after your application to ensure all paperwork was received and is complete and do so each year after your annual eligibility meeting with ADAP.  The agency still relies on paper faxes which have been known to go astray often.

ADAP may pay Medicare Part D premium

ADAP-eligible clients who have to purchase Part D prescription drug coverage may qualify to have their Part D premium paid by the State of California. Follow this link to the Part D Premium Payment Program Application. You can also call the State of California at 916.449.5900 for more information.  (jl)  

D.A.P. contact information    
The local phone number of Desert AIDS Project is 760.323.2118.  If you don't know the extension, simply dial 0 and you'll be connected to a D.A.P. operator during business hours.  The toll-free number is 866.331.3344 and the website is www.desertaidsproject.org. 

D.A.P. holiday closings for remainder of year

      Monday, October 14 - Columbus Day

Monday, November 11 - Veterans' Day

 Thursday-Friday, November 28-29 - Thanksgiving

Wednesday, December 25 - Christmas Day


Riverside County's 211 number for essential services RIV211GREEN

2-1-1 is a toll-free service for residents needing information about essential human services such as affordable housing, food pantries, help for an aging parent, free or low cost health services, addiction prevention programs, employment, support groups, volunteer opportunities, and 1,700 additional services! (jl)

Contact information for state and federal officials--click on name:

President Barack Obama
Senator Diane Feinstein
Senator Barbara Boxer
Representative Raul Ruiz
Representative Mark Takano
Governor Jerry Brown
State Senator Bill Emmerson
State Assembly member Brian Nestande
State Assembly member Manuel Perez


Desert AIDS Project - Community Action Newsletter (DAPCAN) presents published material, reprinted with permission, and neither endorses or opposes any material.  All information contained in this newsletter, including information relating to health conditions, products, and treatments is for informational purposes only.  It is often presented in summary or aggregate form.  It is not meant to be a substitute for the advice provided by your own physician or other medical professional.  Always discuss treatment options with a physician who specializes in treating HIV.  Publication of the name or likeness of any individual in articles in this newsletter is not to be construed as any indication of the HIV status of such individual.  If you do not wish to receive this e-newsletter, please notify us by using the email address below:


For questions, comments, or unsubscribe contact us at: [email protected] 

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