WINTER 2016 ACCESS A PUBLICATION OF COMMUNIT Y RESEARCH INITIATIVE OF NEW ENGL AND Expanding HDAP’s Programs to Better Serve Our Community It may only be the beginning of the year, but CRI’s HIV Drug Assistance Program (HDAP) team is already planning a busy 2016 with expanded training and outreach, improved application processes, and exciting new projects to better serve our community. None of this would be possible without our ongoing collaborations with consumers, case managers, donors, insurers, pharmacists, and clinical providers like you. Building BRIDGEs across Massachusetts Finding health insurance can be difficult, but the BRIDGE (Benefits Resources Infectious Disease Guidance and Engagement) team is here to help. BRIDGE offers assistance and support to clients, providers, and case managers as they negotiate the complicated public and private insurance landscape. The MA HIV Drug Assistance Program is here to help you! The BRIDGE team develops unique training sessions to provide critical information about health insurance options, important factors to consider for people with HIV when selecting insurance, and strategies to avoid potential gaps in coverage with less-than-optimum plans. BRIDGE team members also provide individualized technical assistance to clients as they select coverage during the open enrollment period and apply for governmental programs throughout the year. As we begin 2016, the BRIDGE team is helping HDAP clients reconcile potential tax credits as a result of their enrollment in subsidized health insurance plans from the MA state health insurance marketplace under the ACA. New programs to better serve you INSIDE ACCESS HDAP Update p 2 Expanding HDAP’s Programs to Better Serve Our Community Research Update p 3 Find Out if You Are Eligible for New Trials News and Events p 4-5 You Got Your Wheels Spinning for Ride 13 Your Critical Support p 6-7 A Special Way to Honor and Remember Recognized for our excellence in working with the HIV community, we are embarking on an exciting pilot project with state-funded tuberculosis (TB) clinics to increase the use of health insurance to provide needed medications. The goal of this project is to reduce potential barriers to TB treatment and explore potential cost savings. We are also exploring a new program to assist with the cost of medical co-pays and other out-of-pocket expenses for those HDAP clients most in need. With this new pilot medical co-pay program, we hope to help eliminate barriers faced by Massachusetts residents with HIV in accessing life-saving medications. Easier to use online application You talked, and we listened. CRI is finalizing steps to develop a new electronic HDAP application so program participants can complete and submit their application online. (Continued on pg 2) (Continued from pg 1) Collaborating to improve access, treatment, and prevention HDAP staff is working with colleagues throughout the state to strategize the best way to ensure access to HIV and hepatitis C (HCV) treatment and prevention services, including pre-exposure prophylaxis (PrEP) and recently approved HCV medications. CRI’s clinical research staff members are looking at how CRI can participate in research, diagnosis, education, and prevention planning to help fight emerging global diseases. CRI in the Community From Worcester to the State House, CRI Advocates and Educates CRI staff members George Hastie, Sasha Samuel, Craig Wells, Lauren Dunn, and Julia Green joined organizations from across the state at the World AIDS Day event at the State House BRIDGE team member Lauren Dunn at a training in Cambridge HDAP Program Manager Nirka Rosa at Boston Health Care for the Homeless Rob Quinn joined HDAP BRIDGE Project Manager George Hastie at Worcester Pride CRI ACCESS 2 R C New Open and Enrolling Trials at CRI Find Out if You Are Eligible to Participate CRI is currently enrolling participants in the following clinical trials at our research facility in Boston. For details about additional ongoing studies, visit www.crine.org and click the Join a Clinical Trial button at the top of the homepage. For more information about participating in a clinical trial, call our research team at 617.502.1707. o m m u n i t y e s e a R C h of RESEARCH UPDATE i n i t i a t i v e new england Board of Directors Scott Sylvia, OD, MBA President John W. Devlin, PharmD Vice President Jonathan B. Goode Treasurer Paul Moreno Clerk Alfredo Hernandez Chavez Ann Webster, PhD Leadership Council AMBER The Amber study is designed for people who are at least 18 years old, HIVpositive, and have never been on treatment. This study evaluates how safe and effective an investigational single-tablet regimen is in treating HIV compared to an approved multi-tablet regimen. Participants are randomized to take either the experimental single-tablet regimen darunavir / cobicistat / emtricitabine / tenofovir alafenamide (D/C/F/ TAF), or a multi-tablet regimen consisting of darunavir / cobicistat (DRV/COBI) coadministered with emtricitabine / tenofovir disoproxil fumarate (FTC/TDF). TAF, a component of the experimental regimen, is an investigational novel pro-drug of first-line agent tenofovir that has demonstrated high antiviral efficacy with an improved renal and bone safety profile. HIV medications, labs, and exams are provided through the study at no cost, for the duration of 48 weeks with a possible extension. A bone density substudy is available for participants who sign a separate informed consent. Subjects may be eligible to receive compensation. If you are over 18, have been diagnosed with HIV, and have not been on treatment, you may be eligible to participate! Please contact Joanne Delaney at [email protected] or 617.502.1707 to find out more. BIO SAMPLE CRI is currently seeking participants to donate blood samples for use in the evaluation of new lab testing methods for syphilis diagnosis. Participants must be over 18 and have been diagnosed with syphilis one or more times within the past 10 years. Laboratory test results and / or medical records may be required. Those co-infected with HIV, hepatitis C, or another STD are eligible. Eligible volunteers will be asked to provide four tubes of blood and complete a short questionnaire. Participants will receive a $25 gift card at the end of the visit. For more information, please contact the CRI Research Team at 617.502.1707. New studies are always in development at CRI. For information about participating, visit www.crine.org or call our research team at 617.502.1700. Jon Appelbaum, MD Robert Beck Donald Butterfield, MD Ronald Chapman Mark Christofi Calvin Cohen, MD, MSc, Founding Research Director Carolyn Crowley Jonathan Crutchley Glenn Daidone Victor DePoalo Richard Dickinson Douglas Dolezal Dixie-Lee Esseltine, MD Kenn Freed, CPA Jane Garb Clive Godwin Joel Goldstein, PhD Roger Hanzes Sheila Hussey Larry Hyer Lenore Jackson-Pope, RN, ACRN Bobby Kelley Ian Lekus, PhD Tim Martinez, DMD John Mazzullo, MD Ellen Morris McCann Crane McCune Michael McGuill, DVM, MPH Jim Morgrage Frank Ribaudo Paul Ross, EdD Harry Schrager, MD Sandy Sheble-Hall, RN, ACRN Gregory Welch Executive Director Julie K. Marston, MPH Deputy Executive Director/HDAP Program Director Craig R. Wells, MSL Research Director/Principal Investigator of Hepatitis C Studies Amy Colson, MD, MPH Associate Research Director/Principal Investigator of HIV Studies Hannah Bouldin Olivet, MD Research Operations Director Julia Green, MS, NP-C, CCRP You can connect your community to research, treatment, and education. Like CRI on Facebook, follow us on Twitter, and watch our YouTube videos CRI’s Mission: To lead the way in clinical HIV/AIDS and hepatitis C research and to ensure access to lifesaving drugs and health insurance to those in need. Director of Communications and Development Michael Corrente, MPA ACCESS Editor Marybeth McCabe CRI ACCESS 3 NEWS AND EVENTS New HIV & HCV Medication Chart Available Your Go-To Guide Now Includes Hepatitis C Medications CRI’s HIV & HCV Medication Chart is here! The medication chart is a complete two-page reference guide that displays or names all formulations of HIV and hepatitis C medications currently or recently available as of November 2015. It serves as a powerful educational resource and adherence tool for providers, case managers, and consumers. CRI produces the HIV & HCV Medication Chart with partial funding from the Bureau of Infectious Disease, Office of HIV/AIDS, Massachusetts Department of Public Health. You can view the chart online at: www.crine.org/our-research/hiv-hcv-medication-chart or request full-color laminated copies by contacting Marybeth McCabe at 617.502.1726 or [email protected]. Advocating for Care and Coverage in the HIV Community CRI Supports Bill to Cover Side Effect of HIV Treatment CRI Executive Director Julie Marston and BRIDGE Project Manager George Hastie joined HIV activists from several local organizations to testify before the MA Joint Committee on Financial Services to support a bill that calls for coverage for lipodystrophy treatment. Image courtesy of Gay & Lesbian Advocates & Defenders CRI Executive Director Julie Marston testifies with AIDS Action Committee Executive Director Carl Sciortino While there is simple and effective treatment available for lipodystrophy, it is not generally covered by insurance companies because it is classified as a cosmetic procedure. Passage of this bill would ensure that those suffering from lipodystrophy can access the treatment that they need. For more information about this bill, visit www.glad.org/tlc. Victory Programs Honors CRI Executive Director Julie Marston Celebrating 25+ Years of Commitment to the HIV/AIDS Community On December 10, Victory Programs presented CRI Executive Director Julie Marston with the 2015 Peter Medoff Award for her incredible commitment, dedication, and service to the HIV/AIDS community in Massachusetts. The Medoff Award is given in honor of Peter Medoff, a founder of AIDS Housing Corporation and a dedicated community leader who tackled the issues of poverty, homelessness, and HIV/AIDS. images courtesy of Nancy Millstrom Julie has led CRI for over 25 years and previously oversaw the first Public Health AIDS Program within the Boston Dept. of Health & Hospitals (now the Boston Public Health Commission). On being honored with the Medoff Award, Julie says, “I am very proud of what we all have accomplished, and we are not done. Peter would still be advocating for a cure and for removing stigma. We must too.” Congratulations, Julie! CRI ACCESS 4 (1) CRI Executive Director Julie Marston speaking at Victory Programs’ Homes for the Holidays event. (2) Julie Marston accepting the Peter Medoff Award from Dr. John Mazzullo (left) and Victory Programs Executive Director Jonathan Scott (center) NEWS AND EVENTS You Got Your Wheels Spinning for Ride 13 Thank You for Supporting CRI at Harbor to the Bay On December 2, CRI riders and crew joined members of our staff, CAB, and Board of Directors to celebrate the amazing dedication that raised over $68k for CRI at this year’s Harbor to the Bay. H2B Board President Jim Morgrage presented the Ride 13 check to CRI and reminded us all just how important every mile you ride, sign you wave, hour you volunteer, and dollar you donate to Harbor to the Bay is to making CRI’s HIV/AIDS clinical research, outreach, and treatment education possible. Thank you for being a part of Ride 13! Your support for CRI at H2B funds research that changes lives! Join CRI for Harbor to the Bay Ride 14 on Saturday, September 17, 2016! More details at www.crine.org/h2b For the past 14 years, hundreds of people like you have come together to ride, volunteer, and raise money to support life-saving HIV/AIDs and hepatitis C clinical research by joining CRI at Harbor to the Bay. You can join this amazing group of people today by registering to ride in Harbor to the Bay 2016 and naming CRI as your beneficiary! You’re not just pedaling from Boston to Provincetown, you’re pedaling to save lives! CRI ACCESS 5 n on CRI ACCESS 5 YOUR CRITICAL SUPPORT You Make Lives Better! Thank you to our leadership donors, who go above and beyond to support research that improves lives around the world. Below is a list of the leadership donors who contribute to our important efforts. CRI’s Research Circle honors all of you who take a leadership role in supporting CRI with an annual donation of $5,000 or more: Dr. Cal Cohen Fund honors all of you who support CRI’s efforts with an annual donation of $2,500 or more: CRI’s 1500 Fund is the sustaining gift program for annual donors of $1,500 or more: Jay Anderson 5 Star Travel Services BNY Mellon Community Partnership Robert R. Beck American Tower Corporation Anne Covert Ronald Chapman & Crane McCune ARTCO / Jim Viola Doug Dolezal & Greg Welch Calvin Cohen, MD, MSc Donald E. Butterfield, MD Jonathan Crutchley Rob Caro Kia R. Earp in honor of all those before me Victor DePoalo Community Health Charities of New England John Devlin & Marc Hall Dickinson Lab / Richard Dickinson Discovery Communications Eastern Bank Kenneth Freed, CPA/Kenneth Freed & Company/Freed Investment Group LLC Dixie-Lee Esseltine, MD & Debbie Taylor in honor of Rick Esseltine & Darla Taylor Lisbeth & Lyle G. Hall in honor of Sandy Sheble-Hall Roger M. Hanzes Gilead Sciences Rufus Gifford & Stephen DeVincent/Gifford Family Foundation of the Bank of America Charitable Gift Fund in honor of Cal Cohen, MD, MSc Edward Moore & Shawn Brooks/Moore Family Fund, a Fidelity Charitable DonorAdvised Fund Harbor to the Bay Marcus Builders LLC Sean McConnell Jonathan Goode & Cary Raymond in honor of Doug Dolezal & Greg Welch Seth Grosshandler & Kim Wainwright Danny Hamilton & Paul Hilliard Ken J. Lima & Mark Sacco Loretta Moreno in honor of Paul Moreno & Stephen Barlow Paul Moreno & Stephen Barlow Lawrence R. Hyer/Lawrence R. Hyer Fund, a Fidelity Charitable Donor-Advised Fund Online Buddies Inc. Wendy Marston Myrtle Baptist Church The Red Inn Millennium Matching Gift Program Peter Tenggren Novartis U.S. Foundation Michael Stone, DMD In honor of Ann Webster, PhD Ann Webster, PhD Hannah & Jeffrey Olivet Daniel Sullivan Victor’s Scott Popkowski & Joseph Smith/Popkowski Smith Family Foundation of the Bank of America Charitable Gift Fund Donald E. Vaughan & Lee Ridgway Bryan Rafanelli & Mark Walsh Gary Reinhardt Friends of CRI Jacob Murray, III, DMD Every effort has been made to ensure the accuracy of these lists. We apologize for any errors and ask that you call our Development Office at 617.502.1726 or email corrections to [email protected]. Your generous support makes CRI’s life-changing HIV and HCV treatment research possible! The following donors contributed to our important efforts between September 1, 2015, and December 31, 2015: Philip Allessio & Guy Matsuda in memory of Tom Allessio Martin Almquist in honor of Dr. Hannah Bouldin Olivet Jon Appelbaum, MD Jana Bacon Andrew Balder & Cynthia Sommer Stephen Barlow Carl Bazil Leelo Bertram Sally Bowden/Sally Bowden Fund, a Vanguard Charitable donor-advised fund in honor of Rob Curtis CRI ACCESS 6 James Bragg & Gail McGuill Michael Burke in memory of Nick Houpis William Callahan, MD William Cattey Paula Cohen in honor of Cal Cohen, MD, MSc Marianne Colacray in honor of Alfredo Hernandez Chavez Deborah Colson in honor of Amy Colson, MD Helen & Earl Colson in honor of Amy Colson, MD Anne Covert Keith Crosby Lisa Cruz in honor of CRI & HDAP James Curtin Barbara & Vincent Daidone in memory of all who died Miguel Delgado in memory of Robert Colón & Orlando Falcón John Devlin, PharmD Bruce Dezube, MD & Esther Dezube David DiRocco Rosa & Mark Drapkin, MD John Dreyer in honor of Cal Cohen, MD, MSc Michael & Barbara Eisenson/ Eisenson Family Fund at the Boston Foundation in honor of Calvin Cohen, MD, MSc Charles & Nancy Eliot in memory of David Eliot Ruth Eliot in memory of David Eliot Joan Epstein & Burt Franzman Dixie-Lee Esseltine, MD & Deb Taylor in memory of Phil & Jane Esseltine Abby Flam Andrew Fullem re gize ur or org. o YOUR CRITICAL SUPPORT Jonna Gaberman, MD & Bruce Wintman Brian Galloway Mark Gonthier in memory of David Austin Sharon Gray Paul Groipen Seth Grosshandler & Kim Wainwright Robert Haas Roger Hanzes Don Harpin Mary Kay & Scott Herndon Gavin Hilgemeier William Hollis & John Kramer Lawrence Hyer Nick Jacovides in honor of James P. Sartell John J. Jakimczyk & Wendy Stead Daniel Kasuba Bennett Klein Arnold Kraft Richard & Susan Lampen Timothy Leahy Laurie Leibowitz Tom Lewis Rhonda Linde in memory of David Huchinson George Mair Julie Marston Sarah Marston Wendy Marston Michele Martin Crane McCune Dennis McAvoy & Bruce Poduska Ellen Morris McCann & Peter McCann CONTINUED FROM PAGE 6 Craig Radliff in memory of Victor DePoalo Sr. Neil Raymond & Amy LeVasseur Gary Reinhardt Michael Roberts in honor of Jon Goode & Cary Raymond Lisa Pintchman Rogers & Jay Rogers in memory of Anne B. Morris Nirka Rosa Sean McConnell Larry Rosenberg William McDermott & Paul Reinert Henry Rosenberg, MD & George McGee Katherine Hicks John Morris Jr. & Sarah B. Holmes in memory of Anne B. Morris David Morris Paul Ross, EdD William Jacob Murray Roger Sametz & Ken Nimblett & Rusty Miller DuncanRhys Liancourt in honor of Craig Wells Hannah & Jeffrey Olivet Joe Orfant Matthew Perlman & William Hurlman in memory of Dr. Ron Gelb James Pierce & Rick Creswell Theodore Pietras Mildred Pintchman in honor of Lisa Pintchman Rogers Bernard Plovnick Lenore Jackson Pope Stephanie Qualls in honor of Richard Durkin Steven Schwartzberg, PhD in honor of Craig Wells Cynthia Shilkret, PhD in memory of Anne B. Morris David Silva Richard Smith/Give with Liberty Employee Donation Program John Spagnoletti in memory of Mark Douville Michael Stone, DMD Peter Tenggren Gerald Thorne Steven Tromp Elizabeth Warner Donald Warren Ann Webster, PhD Leonard & Nancy Wells Kathleen Whalen Joel Zimet Businesses, Organizations, & Foundations Abbvie AmazonSmile BNY Mellon Community Partnership Community Health Charities of New England Gilead Sciences Harbor to the Bay Janssen Biotech Inc. Liberty Mutual Foundation Match Program Millennium Matching Gift Program Northstar Asset Management, Inc. Novartis U.S. Foundation Sally Bowden Fund, a Vanguard Charitable donor-advised fund in honor of Rob Curtis State Street Foundation A Special Way for You to Honor and Remember Recognize Someone You Love with a Gift to CRI Mildred Pintchman knows her daughter Lisa is amazing—she is talented, giving, and accomplished. There are many ways for Mildred to show her admiration, but each year, she makes a donation to CRI to recognize Lisa’s special compassion for others. We thank Lisa, a longtime board member, and her mother for sharing a commitment to clinical research that changes lives. You can honor or commemorate someone special in your life and help advance CRI’s mission to lead the way in HIV and hepatitis C clinical research. Your donation is a gift that gives health and hope every day. When an In Honor or In Memory of gift is received, CRI will send a personalized acknowledgement to the person or family indicated notifying them of your thoughtful donation, but not revealing the amount of the donation. You can make a tribute gift online at: http://crine.org/giving-options/donate-now/ or contact Michael Corrente for more information at [email protected] or 617.502.1710. CRI ACCESS 7 You Make Lives Better—You Can Contribute to CRI in Many Ways · DIRECT, UNRESTRICTED DONATIONS Place your gift in the general fund and support the day-to-day activities of CRI. Your gifts of cash, stocks, or securities help CRI conduct research that makes lives better. · MATCHING GIFTS You can maximize your gift if you (or a member of your family) qualify for corporate matching funds. Please check with your company to see if they participate in a matching funds program, and include a matching gift form to double the impact of your gift to CRI. · GIFTS IN HONOR OR GIFTS IN MEMORY You can make a gift in honor of an individual, to celebrate a special occasion, or in memory of a deceased friend or family member. CRI will notify whomever the donor designates. · GIFTS OF BEQUESTS OR PLANNED GIVING CRI is grateful for your bequest gifts via wills and planned giving arrangements. Please consider naming CRI as the beneficiary of your IRA, retirement fund, SEP, or insurance policy. We encourage you to discuss your giving options with your lawyer or other financial representative to determine how you can provide for the future growth of CRI while maximizing your tax benefits. · GIFTS TO TEAM CRI THROUGH THE HARBOR TO THE BAY (H2B) HIV/AIDS BIKE RIDE You can support CRI’s H2B efforts by riding or crewing with Team CRI, donating to your favorite Team CRI participant, or helping recruit sponsors. Visit www.crine.org/h2b to learn more. · GIFTS VIA CRI’S CARS PROGRAM If you have an old vehicle taking up space in your driveway or garage, consider donating it to CRI—your 100% tax deductible donation goes straight to CRI’s critical HIV and hepatitis C research efforts! Our CARS vehicle donation program manages all the logistics, so you don’t have to worry about a thing. A donation envelope is enclosed for your convenience. For more information, please contact Michael Corrente at 617.502.1710 or [email protected]. DONATE ONLINE Just go to www.crine.org and click DONATE “I’ve witnessed firsthand what CRI does. Being involved in numerous research studies over the last 16 years has shown me their expertise, dedication, and commitment. People are alive because of CRI’s work, and to me that says it all!” — Dr. Scott Sylvia, CRI Board of Directors President Check out www.crine.org/our-research/clinical-trials to learn more about CRI’s life-changing clinical trials! our lifesaving research our global impact your critical support o m m u n i t y R e s e a R C h i n i t i a t i v e CRI HDAP 38 Chauncy Street Suite 500 Boston, MA 02111-2301 tel: 617.502.1700 fax administration: 617.502.1701 fax research: 617.502.1702 toll free: 888.253.2712 tel: 800.228.2714 fax: 617.502.1703 of new england email: [email protected] www.crine.org DESIGN: C
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