In a race against time, ARCW fights for use of new power drugs to rid HIV patients of another menace
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Imagine your life being co-infected with HIV and hepatitis C.
Now imagine, after years of dealing with health care regimens for both diseases, that you are able to focus on your HIV alone because you’ve been cured of hepatitis C. This year the hypothetical has become reality for a significant cohort of ARCW patients thanks to the extraordinary and fast-acting teamwork of ARCW Medical Center and Pharmacy staff members.
Treatment for hepatitis C has been available for years, but with a low success rate, a 48 week treatment plan and terrible side effects. The older hepatitis C medications were so rough, not many patients had the stamina to go through the entire year of treatment.
“Imagine coming down with the flu one to two days every month,” said Rick Fons, RPh and ARCW Vice President of Pharmacy. “That’s what it would feel like. That is just from the hepatitis C drugs. HIV drugs also have their own side effects to be mindful of as well. And, unfortunately, at the end of the treatment regimen patients still might not be cured of their hepatitis C.”
Roughly a year ago the Food and Drug Administration approved three new drugs to combat hepatitis C. The combination of drugs provided for a new and reduced treatment schedule as brief as 12 weeks and a success rate of at least 90 percent.
Upon learning the FDA was close to approving these drugs, ARCW Director of Clinic Operations and nurse practitioner Winsome Panton, DNP, used this opportunity to organize ARCW patients by hepatitis C subtypes. There are four major subtypes to be tracked and the new drugs coming to market would likely be used specifically for each subtype,
“The most common subtype of hepatitis C in the U.S. is type 1,” Dr. Panton said.
Due in large part to Dr. Panton’s thoughtful planning, ARCW was to be ready to begin treating patients when the new drugs came to market.
Time is of the essence when dealing with hepatitis C due to the substantial risk for liver damage that can take up to 25 years to show up in an infected person. Even ARCW patients who have changed behaviors that would put them at risk for hepatitis C long ago could still face liver cancer decades later, a bitter challenge in addition to their life with HIV/AIDS.
“Being co-infected with each disease can be an accelerant for both illnesses, so when we treat, the goal is to cure,” Dr. Panton said.
Got Hep C? 18 Percent Say “Yes”
Two years ago, ARCW started an awareness campaign, called “Got Hep C?” designed to help patients speak with their pharmacist, medical provider, case manager or anyone else about their hepatitis C status. Once notified, members of ARCW care teams could then note their co-infected status so they could be categorized by subtype and ready for the new drugs when they came to market.
As additional part of the awareness campaign educated patients on the improved treatment plans to patients who were understandably reluctant to join in. Then, with the help of ARCW patient service representatives, ARCW patients and clients were called, surveyed and recorded for the project. To be eligible for treatment, patients had to be clean of injection drugs and alcohol
Ultimately, the Got Hep C? campaign revealed that 18% of ARCW patients are co-infected with HIV and hepatitis C.
Between October 2013 and March 2014 Gilead and Abbvie secured Federal Drug Administration approval for new drugs, Sovaldi, Harvoni and Viekira.
“We were so excited,” said Fons. “With this set of approvals, we knew we could start to cure patients of a disease that was previously extraordinarily difficult to treat.”
What transpired quicker than treatment, however, was the realization that it was one challenge to reach out, test, and organize a group of patients to receive the right drug regimens. It would be another one just to afford these medications.
Ninety-four percent of ARCW patients live in poverty and at $27,000 per month these highly specialized medications will not make a difference unless approval for use is extended by a payor source. A one month prescription of these drugs is equal to a year of HIV medications.
“We are used to working with expensive meds, but this was more than we thought it would be,” said Fons.
ARCW Pharmacy Supervisor Stephanie Hartwell and ARCW Medical Center Registered Nurse Geralyn Schuster began the elaborate process of getting patients preauthorized for the use of the new drugs. The process to get patients approved for hepatitis C treatment requires 20 to 30 pages of data and roughly 30 days to complete. Fons estimates, in other words, that it takes eight to 10 hours of staff time for each preauthorization.
The persistence is working.
Today, ARCW has treated 22 co-infected patients for their hepatitis C. They all are at various stages of treatment, but by week 4 every patient on the plan has achieved undetectability with their hepatitis C. To be considered “cured”, a patient must be undetectable for six months.
A little more than a year after these new drugs have come to market, ARCW is able to report that nine patients are cured of hepatitis C. That also means nine people who have had to manage the stress of combined HIV and hepatitis C illnesses now can be free to focus on their HIV – and free from the fear of a liver cancer diagnosis.
Ten more patients are awaiting preauthorizations and Medicaid has yet to approve the use of these drugs. With 50 percent of this cohort of patients on Medicaid, six more are on hold and cannot move ahead with treatment.
The Herculean efforts ARCW staff are going through to rid HIV patients of another life-threatening disease is taken in stride. Both Fons and Panton agree that in the end it is about the ability to cure people. None of this would matter, of course if the patient was not at the center of this treatment plan and adroitly following through on managing this care.
A Patient’s Perspective – “Soy Optimista”
ARCW patient, Carlos Martinez holds the rare distinction of having suffered through not one, but a total three earlier attempts to cure him of hepatitis C only to find out each 48 week round of treatment was unsuccessful.
Carlos was diagnosed with HIV in 1989 in San Juan, Puerto Rico. Carlos also was infected with hepatitis C, though no one knew it for another two years.
He moved to Milwaukee in 1999, was married and a father of two when he agreed to his first round of hepatitis C treatment using the less effective drugs. “Within 48 hours I was hospitalized at Froedtert,” he said. “My nails and eyes were turning yellow. There was blood in my urine.” The treatment was stopped and after five blood transfusions his condition was stabilized.
Despite his fear, he again agreed to another attempt to be cured of hepatitis C. This time, he made it through the 48 week regimen, but the result was the same – no cure. Martinez described his side effects, “I had pain all the time and fever and I was depressed.”
Why go through all of this? “Both things in your body are like a bomb. Hep C is bad and I wanted it out of me,” Carlos said. With this in mind, Carlos submitted to a third round of treatment using the less effective drugs.
“Paso lo mismo,” he said. The same thing happened. No cure.
Through the Got Hep C? campaign, ARCW reached out to Carlos, categorized him and got him approved for the use of Harvoni. Today, after 12 weeks of treatment and all that he has been through, Carlos is one of the nine cured of Hepatitis C.
“There were no side effects, no pain,” Carlos said. “I’m jumping! I’m smiling! I’m thanking Winsome because that medication saved me. She saved my life! The medication I get here, the care I get at ARCW has helped me. I’m blessed. Soy optimista.”
Carlos reports that he has been undetectable with his HIV for the past 5 years. Now free of hepatitis C Carlos faces a new diagnosis with his ARCW care team – a longer and healthier life.
Mark your calendars for Red Ribbon Patron Luncheon
One of America’s leading voices on health policy, health care reform and human service delivery will address ARCW donors when Kathleen Sebelius delivers the 2015 keynote address at the ARCW Red Ribbon Patron Luncheon on Wednesday, September 9 at the Wisconsin Club in Milwaukee.
Sebelius is the former U.S. Secretary of Health and Human Services under President Obama where she oversaw a trillion dollar budget and 90,000 employees. In her role, Sebelius oversaw the Centers for Medicare and Medicaid Services which designated ARCW as the first HIV medical home model of care in the United States – and the Health Resources Services Administration which administers the Ryan White Program.
As secretary, Sebelius led the President’s charge for the passage of the Affordable Care Act (“Obamacare”) and was named by Forbes as one of the 100 most powerful women in the world. Sebelius is the first daughter of a governor to have been elected governor in American history; her father John Gilligan served as Governor of Ohio from 1971 to 1975. She holds a Master’s degree in public administration from the University of Kansas and a Bachelor of Arts degree from Trinity Washington University.
“Our Red Ribbon Patron Luncheon presents our donors with a great opportunity this year to hear from a policy leader who has been through an unprecedented journey to reform our nation’s health care system and we look forward to hearing her unique perspective,” said Mike Gifford ARCW President and Chief Executive Officer.
Red Ribbon Patrons are ARCW donors whose cumulative giving meets or exceeds $10,000. Red Ribbon Patrons are invited to the event free of charge in gratitude for their investment in ARCW. Other donors and the public are welcome to purchase tickets for the event. Watch your mailbox for your invitation arriving soon or call ARCW Administrative Assistant Amber Cmelak, 414-225-1543 for details.
The AIDS Resource Center of Wisconsin announced June 26 that ‘NSYNC star Lance Bass and husband Michael Turchin will be the Honorary Chairs of the 26th annual AIDS Walk Wisconsin & 5K Run.
“It is special to find a young couple who wants their marriage to serve a broader purpose right from the beginning,” said ARCW President and Chief Executive Officer Mike Gifford. “We are proud to have Lance and Michael serve as our honorary chairs and are excited for their help with our AIDS Walk fund raising campaign. We look forward to celebrating a successful AIDS Walk and 5K Run."
Bass is a singer, actor and a producer for film and television who perhaps is best known as a member of the hit group ‘NSYNC. In 2006 Bass revealed that he was gay in a cover story for People Magazine and later that year received the Visibility Award from the Human Rights Campaign. In 2007 he released his autobiography, Out of Sync, which chronicles his youth, his rise to celebrity status, his relationships and his struggle to keep his sexual identity private. He has performed on Broadway and was featured in the 7th season of Dancing with the Stars, finishing in 3rd place.
Turchin is an aspiring actor, pop art portrait artist and model. He and Bass married on December 20, 2014 and they allowed their wedding to be aired on cable television, so gay youth could see a gay wedding take place and know that it could be possible for them as well.
“Michael and I are honored to serve as Honorary Chairs of AIDS Walk Wisconsin and 5K Run,” said Bass. “It’s exciting for us to be involved with the fight against AIDS in a state where fund raising is producing amazing results in HIV health care.”
To help raise pledges for AIDS Walk Wisconsin, the Honorary Chairs will participate in a fund raising event the night before the Walk.
“We are eager to meet the people who support AIDS Walk Wisconsin and we look forward to spending time with people who care about the things we care about. We are going to have a great time” said Turchin.
Over the past 26 years, more than 123,000 registrants have participated in AIDS Walk Wisconsin and raised more than $11.9 million. One hundred percent of the pledges raised from AIDS Walk Wisconsin have stayed in Wisconsin to benefit people living with HIV in the state.
“Today, people with HIV live longer in Wisconsin than almost anywhere in the United States,” said Mr. Gifford. “HIV is a complex and expensive disease and if we want to continue to see these results we have to register, raise pledges and turn out for events like AIDS Walk Wisconsin on October 3.”
For the 26th annual event a new website will optimize the user experience, making it easier to register and donate, and is now mobile phone compatible. AIDS Walk Wisconsin will take place on Saturday, October 3rd at the Summerfest Grounds in Milwaukee.
“Don’t wait. Register for the Walk and Run today at www.aidswalkwis.org and we will see you in October,” said Bass.
Since its merger with AIDS Network was formalized on February 1, ARCW has achieved a significant number of goals designed to ensure integration of the two organizations and make sure patients and clients have access to expanded services. The expansion of care delivery is one of the five guiding principles of the merger agreed to by the boards of directors at the outset of the merger process.
In Madison, the following programs have been expanded:
“The merger of ARCW and AIDS Network was intended to help expand the HIV Medical Home model of care into Southern Wisconsin and enhance clinical outcomes for people with HIV,” said Mike Gifford, ARCW President and Chief Executive Officer. “It is a great reflection on the dedication of everyone at ARCW that we are well on our way to achieving these lofty goals by accomplishing these key initial steps.”
To further support the successful integration of the two agencies post-merger, ARCW has also established eight workgroups to review operational changes and best practices that would enhance HIV prevention, care and treatment services. These groups, which are led by ARCW staff are focused on medical and dental care integration; pharmacy; social services and prevention; administrative systems; community relations; communications and fund development; behavioral health and organizational development. The output of these workgroups will be used in the development of a full integration work plan.
Volunteers and Riders Encouraged to Participate in Annual Wisconsin AIDS Ride
The 13th annual 4-day, 300 mile bike ride is a fundraiser for the AIDS Resource Center of Wisconsin that also raises awareness about HIV/AIDS in our state. The ride, also known as ACT 13, takes place July 30 – August 2. The Ride begins and ends in Madison with three nights at a camp in Horicon. Every year this amazing challenge attracts bicycle enthusiasts, endurance athletes and amateurs alike from across the state and around the country. To date, the 12 previous rides have grossed over $3.1 million. The Wisconsin AIDS Ride is one of the oldest and largest HIV/AIDS cycling fundraisers in the United States.
In addition to riding for all four days, there is a 1-day, 100-mile Century ride option (August 1), and new this year, a 2-day Weekend ride option (August 1 -2). It takes hundreds of volunteers to support this dynamic event—both crew members who participate all four days and day crew who volunteer for specific tasks during the Ride. If you would like more information about how you can volunteer or cycle in this year’s Wisconsin AIDS Ride—or make a donation, please visit the official website, www.actride.org; or contact Dan Curd, Associate Director of Special Events, firstname.lastname@example.org (608) 316-8601.
In honor of its 30th anniversary year, the AIDS Resource Center of Wisconsin will be participating in DoorsOpen Milwaukee September 19th and 20th. This unique event will provide visitors an opportunity to see ARCW headquarters and the ARCW Medical Center – one of the top-performing HIV health care systems in the country. Through its integrated medical, dental and mental health clinics, its pharmacy and dedicated social services (food pantries, a legal program, and social work case management), more than 3,300 HIV patients in Wisconsin gain the health care and social services they need to post some of the best HIV health care outcomes in America today.
Guided tours of the facility will be led by staff and volunteers, offering educational and informative direction regarding the services and care provided by ARCW. Visitors will have the opportunity to tour the ARCW Medical Clinic, Dental Clinic, and the award winning Food Pantry, as well as learn about the history of the current Milwaukee location. All five floors of the headquarter facility are accessible to ARCW clients, patients, and visitors, by elevator.
ARCW Milwaukee will be open for guided tours during Doors Open Milwaukee weekend from 10:00 AM – 5:00 PM Saturday, September 19th and Sunday, September 20th. This event is free and open to the public. Interested guests can sign up for AIDS Walk Wisconsin on site as well. To volunteer for the event, call ARCW Chief Development Officer Dan Mueller, 414-225-1543.
From left to right: ARCW Staff Attorney Miri Pogoriler, Director of Human Resources Anne Daugherty-Leiter and Vice President of Compliance and General Counsel Dan Guinn
ARCW Staff Attorney Miri Pogoriler, Director of Human Resources Anne Daugherty-Leiter and Vice President of Compliance and General Counsel Dan Guinn, all of whom are former AIDS Network attorneys, have contributed content for the new publication, Sexual Orientation and the Law.
As society has become more accepting of lesbian, gay, bisexual, and transgender (LGBT) individuals, the law has evolved to accommodate them. Sometimes this process has been painfully slow, and almost always it has lacked an abundance of clarity. The lawyer with an LGBT client must often start anew with each issue, reviewing case law and literature to find the best course of action.
Sexual Orientation and the Law is a one-stop summary of the law as seen through the prism of gender identity, a place where experienced professionals share their hard-earned knowledge and offer practical approaches and solutions to such issues as Domestic Partnership Registry, Employment Law, HIV, Tax Law, Legal and Equitable Claims at Termination of the Relationship, Domestic Partnership Rights at Partner’s Death, Estate Planning for Same-Sex Couples, Family Formation and Protection and the Intersection of Hostility and Sexual Orientation.
The book was compiled prior to the merger of the AIDS Network and ARCW. Copies of the book, including updated supplemental materials in keeping with legalized same-sex marriage can be ordered by clicking here.
During this Pride Season, the Shepherd Express in Milwaukee is celebrating “individuals who in various ways have worked hard, took risks and paid various prices to move the ball forward for the LGBT community.”
With that in mind, the publication has named Doug Nelson, former ARCW President and Chief Executive Officer (1988-2012) one of seven recipients of its 2015 LGBT Progress Awards. “The history of the AIDS epidemic will always begin with a chapter that explains how the LGBT community rallied together at a time of enormous crisis to support gay men who were threatened by this unimaginable fatal disease,” said the Shepherd Express.
Earlier this year, ARCW earned recognition from Graphic Design USA as a 2015 American Package Design Award Winner. This year’s award honors the design of the 2014 AIDS Walk Wisconsin and 5K Run Point of Purchase Display and Trading Cards.
“We couldn’t be happier to have earned this recognition from Graphic Design USA,” said ARCW Vice President for Government and Public Relations, Bill Keeton. “Of almost 2,000 entries, to have ours selected among the top 15% from across the nation is a great honor.”
Not only was the project aesthetically pleasing, the entire AIDS Walk Wisconsin branding and marketing plan for 2014 helped that years walk raise more money than any other AIDS Walk Wisconsin since 2003.
Graphic Communications Manager Michael Burmesch is the lead graphic artist at ARCW. In this role, Michael is responsible for the development of all print and electronic graphically designed projects ranging from elegant special event invitations to gritty prevention materials designed to capture the attention of a wide variety of audiences.
On May 2, 950 guests gathered at the Wisconsin Center in downtown Milwaukee for the 29th Annual Make A Promise Gala and Auction. The event, themed “Electrify the Promise,” broke a record for the sixth year in a row, raising $311,395 to help people living with HIV/AIDS access critical health care and services.
Honorees were recognized at this year’s gala. Corporate champion MillerCoors, the first global corporation in Wisconsin to support the fight against AIDS, was honored with the 2015 Vision Award for its 25 years of philanthropy to ARCW. Other award recipients were: the Wisconsin AIDS Ride Steering Committee, which received the 2015 Leadership Award for dedication to creating a unique fundraising event; the Brewers Community Foundation, which received the 2015 Philanthropy Award for outstanding support and partnership with ARCW for more than 20 years and Tim Clark, who received the 2015 Courage Award for tireless advocacy efforts on behalf of people living with HIV.
Guests were welcomed into an enchanted electric garden by fauns and sprites, and enjoyed dinner and dancing among a sea of electric flowers and neon decor. New this year, an automated auction added excitement and kept the friendly competition among bidders lively. Long-time friend of ARCW, WISN anchor Toya Washington, once again served as emcee, keeping the theme alive with her electric blue wig. Former AIDS Walk Wisconsin & 5K Run Honorary Chair Ryan Braun even shared a video message with all in attendance.
A special collection taken during the dinner raised $60,302 for the ARCW Medication Assistance Program, a $200,000 fund that covers co-pays and non-HIV related medication assistance for uninsured and underinsured ARCW patients.
To see more photos from the evening, click here.
In conjunction with its 30th anniversary celebration this year, the AIDS Resource Center of Wisconsin recently donated its historical records to the Archives of the University of Wisconsin Milwaukee Libraries and on May 19 nearly 100 ARCW and UWM donors gathered to dedicate the collection at the Golda Meir Library. This gift provides inspiration for an HIV/AIDS History Project that will document the unique history of AIDS in Wisconsin from multiple perspectives.
With a shared goal of raising $50,000 with ARCW, UWM will employ a one-year, full-time archivist, open the ARCW archives for research, collect records from other organizations and individuals, and begin an oral history project.
To date, $41,000 toward the $50,000 goal has been raised. The HIV/AIDS History Project will ensure that Wisconsin’s role in the continuing fight against HIV/AIDS is remembered and shared.
Visitors to the UW-Milwaukee Golda Meir Library can see a display of ARCW’s historical records now on view through August 2015. To make a donation to this project, call ARCW Chief Development Officer Dan Mueller, 414-225-1543.
The thirtieth floor of Kilbourn Tower condominiums was the place to be on Friday June 19th as roughly 150 guests attended the 27th annual Challenge Party raising a record $85,000 for four local LGBT charities, breaking its record of $78,575 last year. The AIDS Resource Center of Wisconsin has been one of the beneficiaries of the Challenge Party since its founding.
Guests were greeted with champagne in the lobby of the building and then whisked up to the party on the private elevator delivering them into a 6,200 square foot “art gallery in the sky,” home to Milwaukee art photographer Peggy Ann. Stunning floor to ceiling views of downtown Milwaukee in all four directions greeted the crowd.
The 2015 “Challengers” covered 100 percent of the costs of the event so all revenue raised at this event may go directly to the charity of the attendees’ choice. Three other charities were featured this year aside from the AIDS Resource Center of Wisconsin, including the Milwaukee LGBT Community Center, the Alliance School and the Pathfinders Q-Blok Program.
The event raised $20,000 for ARCW. ARCW President and Chief Executive Officer, Mike Gifford thanked the attendees for their loyal support of the fight against AIDS. ARCW thanks the 2015 Challengers: April Calvert, Anne Curley, Sue Haertel. Peter Larson, Dale Leifker, Patrick Mitsune, Wendell Perkins, Emily Phillips, Steph Zilli and Salvatore Zizzo.
On Thursday June 4 the Milwaukee Gay Sports Network and AIDS Resource Center of Wisconsin held the 4th annual Big Gay 5K on Milwaukee’s Lakefront. The Big Gay 5K is Milwaukee Gay Sports Network’s annual fundraiser for AIDS Walk Wisconsin.
Presented by the Cream City foundation, the annual 5K run has become a fun and healthy way to kick-off Gay Pride weekend in Milwaukee. Emceed by ARCW donor Karen Valentine, the race raised more than $16,000 which will benefit both the Milwaukee Gay Sports Network and AIDS Walk Wisconsin.
“We are honored and feel privileged to be able to support both LGBT athletics in Milwaukee and the amazing work that the AIDS Resource Center of Wisconsin does for people in Wisconsin living with HIV,” said Peter Nys, President of the Milwaukee Gay Sports Network. “We believe in working together to support the community and improve the lives and wellbeing of everyone.”