"People in the United States seem to have grown complacent and forgotten that HIV/AIDS is not just a problem overseas, but one here in our own nation. With as many as 1.1 million people in our country living with HIV/AIDS, our government, through passing a new Ryan White CARE Act, must ensure that lifesaving drugs, medical care, and social services are provided to those in need, wherever they live."
"Continued flat funding for CARE Act programs will do little to help eliminate current waiting lists, and nothing to extend care and treatment to people who aren't even on those lists. Instead, it will only serve to pit city against city and state against state for the limited dollars available. A person's ability to receive treatment should not depend upon where in the country they live."
"The Ryan White CARE Act works -- that is why it must be reauthorized. In the devastation following Hurricane Katrina, one of the only bright notes was that the Ryan White/ADAP system in states across the country went into high gear to assure that poor patients could access their life-saving medications. The CARE Act and the systems it has created serve as a model for all medical care in the U.S."
"Ryan taught us that AIDS can strike anyone, anywhere. As we work together to renew the Ryan White CARE Act, I urge the Congress and the Administration to provide adequate funding so that everyone who is in need of these lifesaving medications and medical care, can have the chance to live productive, healthy and longer lives."
"With as many as 1.1 million people in the U.S. living today with HIV/AIDS, and nearly 3 out of 4 of them uninsured or relying on public assistance, the CARE Act for them is a matter of life or death. This media campaign will remind Americans that HIV/AIDS exists in everyone's neighborhood and that despite the success of the Ryan White program, not all Americans have access to lifesaving care and treatment."
"The Ryan White CARE Act has a proven track record of success in providing lifesaving drugs as well as a full range of medical care and support services. The CARE Act is keeping people alive much longer than ever before. It has had strong bipartisan support from Congressional leaders over the years. We expect the same this year -- swift passage of reauthorization legislation this fall."
Resources at The Body:
Regional Speakers' Bureau
Voices From Across America
The Ryan White CARE Act serves more than 500,000 people each year. It is the federal government's largest program specifically for people living with HIV disease. Here are the stories of just a few of the people directly impacted by this Act.
- Jonathan S. Appelbaum, Physician, Chestnut Hill, Mass.
- Wayne Bockmon, Physician, Houston, Texas
- Judith Feinberg, Physician, Cincinnati, Ohio
- Jason Flamm, Physician, Sacramento, Calif.
- Kathy Hall, Physician Assistant, Billings, Mo.
- Margaret Hoffman-Terry, Physician, Allentown, Pa.
- Carrie Jeffries, Nurse Practitioner, Palo Alto, Calif.
- Bethsheba Johnson, Nurse Practitioner, Chicago, Ill.
- Wendy Leonard, Physician, Santa Cruz, Calif.
- Michelle Lopez, Patient Treatment Administrator, Bronx, N.Y.
- Robert Macomber, Physician Assistant, Waterloo, N.Y.
- Alice Myerson, Nurse Practitioner, Bronx, N.Y.
- Carlos A. Perez, Patient, Rapid HIV Testing Program Manager, Chicago, Ill.
- Mary Lynn Purcell, Nurse, Decatur, Ga.
- Donna Sweet, Physician, Wichita, Kan.
- Joel Wesley Thompson, Physician Assistant, Charlotte, N.C.
- Aimee Wilkin, Physician, Winston-Salem, N.C.
Jonathan S. Appelbaum, M.D., FACP, AAHIVS, has over 20 years of clinical experience ranging from private practice to community health center sites. While he is currently working at Brigham & Women's Physician Group, he previously worked at Fenway Community Health in Boston and served as Medical Director there for over eight years. Fenway is one of the largest Ryan White CARE Act providers in Boston, receiving funding from both Titles I and III, and caring for over 1,100 HIV-infected patients.
Other professional activities include: Transitional Chapter President, Massachusetts American College of Physicians-American Society of Internal Medicine Chapter, Governors Council, Massachusetts Chapter of American College of Physicians. Dr. Appelbaum has been involved with the American Academy of HIV Medicine on a local, regional and national level, currently serving as Secretary on the National Board of Directors.
According to Dr. Appelbaum:
Even in a medical oasis such as Boston, the Ryan White CARE Act provides funding to patients with HIV for primary care services that would otherwise be unfunded. The Ryan White CARE Act acts as the final safety net for many of my HIV patients. Many patients benefit from the HIV Drug Assistance Program, without which they would go without the beneficial medications that keep them alive. I would not be able to provide the quality primary HIV care I do to many of my patients without the support for core services we receive from the CARE Act.
Dr. Wayne Bockmon is a staff physician at the Montrose Clinic, one of the largest providers of health care to the lesbian, gay, bisexual and transgendered community in Houston, Texas. He is a graduate of Southwestern Medical School in Dallas and obtained his specialty training in family medicine at the University of Texas-Houston. He has been involved in HIV clinical care and research since 1987.
In 1995, Dr. Bockmon retired from clinical medicine due to his own battle with HIV disease, but was able to return to work in 2000. His clinical interests include HIV care in minority and immigrant populations, patient advocacy and transgender health care.
According to Dr. Bockmon:
I work at the Montrose Clinic in Houston, where we care for about 1,300 people living with HIV disease. I've been involved in this field since the beginning of the epidemic. For me, the ability to offer life-saving treatment contrasts starkly with the early days, when there seemed to be no end to the loss. With the exception of those with Medicaid, all of our patients at the Montrose Clinic depend on Ryan White funding for their care. In the last seven or eight years, I've seen person after person halt the progression of this deadly disease and regain their lives. Instead of addressing end-of-life issues with my patients, I now coach them on health maintenance, and we speak of the future -- education, careers, relationships and growing old.
I could write of a thousand personal stories, but the one that always comes to mind is that of a woman I'll call Mrs. C. Like many women, Mrs. C learned of her HIV disease after her ex-husband died of AIDS. She was treated briefly in another city, but slipped into depression, stopped her medications and came back to Houston thinking death was inevitable. When her health markedly deteriorated, friends brought her to the Montrose Clinic. She weighed 87 pounds, looked chronically ill and was unable to sit upright. She refused hospitalization, but was willing to consider drug treatment. She told me in that first encounter that the one last thing she wanted was to visit her 2-year-old granddaughter in San Francisco whom she had never seen. We talked about how bad her disease had gotten, what she could expect from treatment and what the upcoming weeks might hold. I explained that the first few weeks might be rocky, but that when she did recover she could certainly travel to see her grandchild.
The first couple of months were indeed tough, with a few setbacks, but she took her medications and got slowly better. On the third visit she sat up on her own. Around the third month of treatment I met a Mrs. C I did not recognize -- a tall, beautiful, well-dressed woman who smiled broadly and laughed at my expression of surprise.
Mrs. C and I became friends. We are the same age and share the experiences of our generation. Six months after starting drug treatment, she traveled to San Francisco and brought back photographs of her granddaughter and herself to share with us on a clinic visit. Not only had she realized that wish; she was eventually able to go back to work as an accountant and resume her life. I referred her to a colleague in private practice when her new health insurance picked up her medical care.
One of our social workers told me only recently that he had once asked Mrs. C what changed her mind about treatment. Mrs. C told him that on that first visit, my using the word "when," not "if," when referring to her recovery made her believe she could make it. I had done this not with premeditation, but because I believed it to be true based on experience. Until then she thought AIDS was a death sentence.
AIDS is not a death sentence if we offer what is now medically possible. The Ryan White program allows us to do that.
Dr. Feinberg is Professor of Medicine at the University of Cincinnati College of Medicine, Cincinnati, Ohio, where she provides primary care to over 250 HIV-infected individuals. She is Principal Investigator of the University of Cincinnati AIDS Clinical Trials Unit and has served as a member of the AIDS Clinical Trials Group (ACTG) Executive Committee, and as Vice-Chair and then Chair of the ACTG Opportunistic Infections Committee. In 1995-96 she was a Senior Health Scientist in the Office of AIDS Research, National Institutes of Health. In this position she was responsible for policy, fiscal planning and scientific oversight for NIH-sponsored research in HIV therapeutics, both preclinical and clinical. She has served on the U.S. Food and Drug Administration's Antiviral Drugs Advisory Committee and on the Public Health Service Guidelines Task Force for the prevention and management of opportunistic infections. Dr. Feinberg is also an Associate Editor of AIDS Clinical Care and Infectious Diseases in Clinical Practice.
According to Dr. Feinberg:
Our clinic, the University of Cincinnati Infectious Diseases Center, cares for over 1,750 persons with HIV, the majority of whom are the working poor and uninsured. Ryan White Titles II & III grants are critical to our ability to provide state-of-the-art care for many of our patients.
Dr. Jason Flamm is an attending physician with the Kaiser Permanente Medical Group in Sacramento, Calif., and Associate Professor of Medicine at the University of California-Davis Medical Center. He is Co-Director of HIV Clinical Services and Director of the HIV Clinical Trials Unit at Kaiser Permanente in Sacramento. As a provider of HIV clinical care for more than a decade, he has worked both in the nonprofit, community-based clinic setting and, for the past five years, in a large nonprofit health maintenance organization. Active in regional and national HIV issues, he is a member of Kaiser Permanente's regional HIV Advisory Board and a national representative on the American Academy of HIV Medicine board of directors, with interests in patient care issues and public policy.
According to Dr. Flamm:
Having worked in both the community-based, nonprofit HIV clinic setting and a large, managed care system such as Kaiser Permanente, I have seen the tremendous benefit and assistance that Ryan White funding has provided to an incredibly vulnerable patient population. Be it assistance obtaining medications, housing or social support, the Ryan White CARE Act has been instrumental in assuring continued access to life-saving medications and care that have dramatically improved the lives of my very diverse patient population.
Reauthorization and increased support is essential if we hope to sustain and improve upon the gains that we've experienced with this devastating epidemic of HIV/AIDS.
Kathy Hall, R.N., PA-C, has 20 years experience in public health. She has worked as a PA with HIV/AIDS clients providing direct client services through the Ryan White Title III Program since 1995. She has been a Consultant with the Northwest AIDS Education and Training Program through the University of Washington for the past several years and travels around the state to speak to providers groups about HIV/AIDS. She does clinical preceptorships for providers from eastern Montana to help to educate them about HIV/AIDS and to develop working collaboration with these providers to co-manage clients so that the clients may receive care in their home communities. Kathy is an active member of the Montana Governor's AIDS Advisory Group and the Montana State HIV/AIDS Treatment Planning Group.
According to Kathy:
I have been a provider of primary HIV care to patients through the Ryan White Program since 1995. Increased morbidity, mortality and transmissibility occurs when patients are not in care and are not being treated for their HIV infection. I have had several instances where patients present to clinic with advanced AIDS and are near death. Recently, a 51-year-old man presented to clinic; he had a history of hypertension and diabetes. He had also been in a wheelchair for the past year, because he could no longer walk, and had endured a 60-pound weight loss and was very weak. He had advanced AIDS with encephalopathy, which resulted in his wheelchair confinement. After three months of HIV therapy, he had regained over 20 pounds, was walking with a cane and had a significant improvement in his overall health status. Without HIV therapy, he would have succumbed within weeks of presenting for care. Please continue Ryan White funding for primary care, treatment, mental health, case management and substance abuse. Many HIV/AIDS patients have comorbid mental health and substance abuse issues that must be treated in addition to management of their HIV/AIDS.
Dr. Margaret Hoffman-Terry is Clinical Assistant Professor of Medicine at Penn State University School of Medicine and Chief of the Division of HIV Medicine at the Lehigh Valley Hospital in Allentown, Pa. She is Medical Director of the largest Ryan White-funded clinic in the Lehigh Valley, which provides a full spectrum of primary care services for 500 HIV-positive adults. She completed her medical education at Temple University, an internal medicine residency at Lehigh Valley Hospital, and an infectious diseases fellowship at Thomas Jefferson University Hospital. In 1997 she started an HIV research program at Lehigh Valley, which has since grown to offer as many as five concurrent trials, including hepatitis C and HIV vaccine trials.
Dr. Hoffman-Terry teaches internal medicine residents, family practice residents, medical students and physician assistant students, and directs the Medical Residency Research Program at Lehigh Valley Hospital. She is a Fellow of the American College of Physicians and has held the HIV Specialist Credential of the American Academy of HIV Medicine since 2002. She is on the advisory board for Pennsylvania's Special Pharmaceutical Benefits Program and is also a member of the board of directors of the Delaware Valley Regional Hepatitis Resource Center. Her primary research interest is HIV and hepatitis C coinfection; she has presented both nationally and internationally on this topic.
According to Dr. Hoffman-Terry:
Having dedicated my career to HIV care for the past decade, I've seen tremendous changes in HIV care in the United States. We've made stunning progress in our ability to keep people alive for years -- often decades -- and feeling well for the majority of that time. Ryan White funding provides care for the majority of my patients.
I care for a very sweet lady who was down to under 100 pounds and writing her living will just prior to the release of saquinavir (Invirase). Almost a decade later, she remains healthy and happy at 150 pounds, and has been able to work and remarry.
I have many similar success stories, all courtesy of Ryan White funding, which allows us to provide medical care, as well as the case management and nutritional services that give people quality of life.
Carrie Jeffries, ANP-C, M.S., M.P.H., AACRN, AAHIVS, recently accepted a position as the Clinic Manager and Nurse Practitioner at the Stanford University Positive Care Clinic where she provides direct HIV/AIDS care in addition to presenting on the subject matter throughout the United States. Prior to this, Ms. Jeffries was the Associate Medical Director of a large inner city, Ryan White-funded clinic in Baltimore, Md. Ms. Jeffries was also a Clinic Instructor at the University of Maryland School of Nursing.
In addition to her clinical and management duties, Ms. Jeffries serves as the Nurse Practitioner Committee Chair of AAHIVM, is President-Elect of the HIV/AIDS Nursing Certification Board, and participates as a member of the Adult AIDS Clinical Trials Group Underserved Populations Working Group. In 2005, Ms. Jeffries was nationally recognized with the AIDS Care Nurse of the Year Award and also serves as a distinguished lecturer for the Association of Nurses in AIDS Care.
According to Carrie:
Not only has Ryan White (RW) funds allowed my inner city Baltimore patients to gain control of their life and allow them to reintegrate into society, it has also allowed middle class working men and women in Palo Alto to maintain their health after losing their jobs. One patient, who had a zero CD4 cell count, told me he would just work one manual labor job instead of four so his HIV would 'go away' because he couldn't afford medications. Fortunately he was able to access RW funds and now he works his manual labor jobs, has a high CD4 count, and is very healthy. The Palo Alto business man, who lost his insurance, connected with a local AIDS Service Organization who linked him with an HIV Specialist who was then able to work, collaboratively, with several organizations and individuals, to provide this uninsured gentleman with quality HIV care until he found another job with excellent health insurance. Successful stories abound related to RW services and the populations who utilize them.
Nurse practitioner Bethsheba Johnson is part of an entirely African-American medical staff that provides specialized HIV care at the Luck Care Center on Chicago's far South Side to a population that is 97 percent African American.
It is one of few HIV clinics in the area that is staffed entirely by African Americans, which Bethsheba feels can be an advantage in that it gives her and her colleagues a better cultural understanding of their patients. The clinic is also a one-stop agency: It not only conducts clinical trials, which Bethsheba helps coordinate, but it provides its patients with a wide range of services, including primary care, adherence counseling, case management, mental health counseling, substance abuse counseling and support groups. Bethsheba also works with many of the female patients at the clinic.
According to Bethsheba Johnson:
A common issue I see with women who are HIV positive is their devotion to taking care of their children. Our female patients are primarily mothers. They take care of their children first and neglect themselves. The age range is between 20 and 56. About 80 percent have heterosexual sex as their risk factor for HIV. The other 20 percent have injection drug use as their risk factor. Quite a few are single mothers with mental health disorders.
Approximately 55 percent have Medicaid/Medicare, 42 percent are Ryan White Care Act patients, and 3 percent private insurance. All of our Ryan White Care Act patients receive ADAP.
The biggest challenge I face is taking care of people with reduced resources, who must rely on Ryan White CARE Act funding. I see patients paying so much for their medication that they can't make ends meet. The Illinois AIDS Drug Assistance Program (ADAP) does not cover non-HIV medications such as antihypertensives, oral hypoglycemics, statins, etc. The need for these medications is mostly related to genetics and adverse drug events from HIV medications. It is also a big challenge trying to educate that -- without exception -- everyone is at risk.
Many of my patients would not be in treatment if it wasn't for Ryan White CARE Act funding -- and there are many more who don't realize that benefits are available, and as a result they don't come in for care. Another one in four people in the Chicago area are not in treatment because they don't know they are positive -- we could see quite an increase if the word continued to get out that everyone needs to be tested. Our current budget, including the Ryan White funding does not cover the needs of our patients. We often have to spend valuable time fundraising to help treat those who need Ryan White funding. Many times we find ourselves struggling to meet the demands. And we have to ask, "who is going to care for these people when we've been flat funded for five years and now the president wants to reallocate funds to other regions?" I applaud the President and Secretary of HHS for wanting to make HIV/AIDS a top priority but the way they are going about it is not ideal -- we need to increase the money and help those people in the rural areas but if you take money away from areas where there is high prevalence we are going to be facing the same situation we faced in the 1980s with people dying from AIDS at an alarming rate.
Dr. Leonard has worked at the Santa Cruz County Medical Clinics for the past five years. She provides HIV care for adolescents and adults, and has a special interest in working with women who are HIV positive. She also provides prenatal care for women who are incarcerated at the Santa Cruz County Jail, and provides HIV care to pregnant women. She acts as Chairman for the Perinatal Council on Substance Abuse and Families in Santa Cruz County. She has recently been requested to become a member of the Board of Directors for the Santa Cruz AIDS Project.
According to Dr. Leonard:
I have been working with the HIV population in Santa Cruz County for the past five years. In this time, I have seen incredible changes in the lives of those I work with. The vast majority of people that I work with is socioeconomically disenfranchised and has little sense of entitlement. In many cases, there is a lack of sense of entitlement to even have adequate health care. I strongly believe that my role as a physician is, in part, to empower my patients. The Ryan White Act has been an essential part of providing the tools that my patients need. This program provides mental health services to those who so desperately need it. In so many cases, the key to control of this virus is in our ability to manage comorbid conditions such as mental illness and substance abuse. I have witnessed many examples of people that have pulled themselves out of homelessness and substance abuse after receiving the appropriate mental health diagnosis and treatment. With patience and the appropriate treatment, these people have begun to rebuild their lives and take care of their health.
The Ryan White Act provides funding for the Early Intervention Program (EIP). In the beginning of this epidemic, early intervention was generally focused on prevention of HIV transmission and encouraging healthy behaviors. In the past several years, however, the immense growth in research and medication options has completely changed the definition of early intervention. Early intervention now includes providing HIV medications and monitoring at the appropriate time before someone develops AIDS. Because of the sad state of our health care system, EIP provides essential care to many people who do not have any other health coverage. In many cases, these are people who are considered healthy enough to work and so do not qualify for Medicaid, but are unable to obtain health care coverage from their employers. Ryan White funding allows people who are uninsured to obtain medications crucial to preventing the progression of HIV to AIDS. Without medications, we would find ourselves in a situation similar to the beginning of this epidemic. The following is just one example of how EIP funding is crucial:
KR is a 24-year-old pregnant Latina woman who discovered that she is HIV+ during routine laboratory testing preformed by her obstetrician. At this time, KR is in her first trimester of pregnancy. She qualifies for Medical to cover her pregnancy, but unfortunately is not eligible for full-scope Medical. This means that she has no coverage for any health condition other than pregnancy. The standard-of-care for a pregnant woman with HIV is to begin HIV medication by 14 weeks of pregnancy. This is to ensure that the HIV virus is well-suppressed at the time of delivery so as to prevent transmission of HIV to the unborn child. Fortunately, we were able to utilize EIP funding to cover laboratory testing and clinic visits necessary to manage her HIV. We have been able to start HIV medications through ADAP, which is another program funded under the Ryan White Act. Without Ryan White funding, this could have been a tragic situation. Instead, it is very likely that we will be able to prevent the transmission of HIV to KR's baby and she will remain healthy for her children.
The appearance of the HIV epidemic has changed dramatically in the past several years. In many ways, it has become a condition that is controllable with the appropriate treatment. HIV, however, is in no way any less dangerous than it was 25 years ago. If the most vulnerable and disenfranchised members of our communities are denied access to the health care and medications that they need to control this virus, they will find themselves in the same situation as those who are HIV positive in third world countries. Not only will this cost our nation financially, but it will define us as a nation that is unwilling or unable to provide basic needs to our own people. I can only hope that I am a citizen of a nation that places the care and well-being of its own people at the highest level of priority.
The highly energetic and talkative Michelle Lopez has a lot to say for herself as a mother, a lesbian, a trauma survivor, and a woman living with AIDS. Michelle emigrated from Trinidad at the age of 16, and has made her home in New York City ever since. Diagnosed with HIV after the birth of her second child, Ms. Lopez fought the loneliness and isolation that accompanied that diagnosis and became not only an advocate for herself and her daughter, but for other immigrants and women living with HIV. Empowered by her own boldness and desire to understand and survive HIV infection, she now advocates for some of the most vulnerable members of the HIV community, including undocumented HIV positives.
Her job as Treatment Administrator for the Community Healthcare Network takes her to parks, shelters, and WIC centers throughout New York City in search of disenfranchised people in need of HIV care and services. In the past 13 years, she has been involved with over 40 different organizations, either in an advisory or board capacity. In 1996, she organized with other community activists to form the Bronx Lesbian & Gay Health Resource Consortium. She joined the board of directors for Bronx AIDS Services in 2000, and worked with other mothers throughout New York City to found JUST KIDS, a not-for-profit serving children affected by HIV and AIDS. All this she does while raising her children and speaking out through various media outlets as a lesbian mother living with AIDS.
According to Michelle:
My child is 15 years of age today and from the onset of her being diagnosed, I have been worried about how I would pay for her treatment. As a single head of household, former undocumented immigrant, and individual who is also HIV positive, I was initially very fearful of not being able to pay for her medical care. But thanks to the Ryan White CARE Act and Title IV funding, we were able to get the treatment she needs.
Because of the impact of the virus and multiple infections, my daughter lost her hearing. Ryan White Title IV funding helped cover the cost of hearing aids. Basically, it helps fill in the gaps and helps with her survival. My daughter also receives a tremendous amount of psychological support to handle her situation. She's a teenager living with HIV/AIDS with a mother living with HIV/AIDS and that causes her to question her identity. She's faced discrimination and has had trouble with acceptance from her peers. Ryan White funding has provided needed psychosocial support, but I'm afraid that President Bush's new guidelines for Ryan White funding may change all that.
If he has his way, no one will be paying attention to the mental health status of individuals with HIV/AIDS. How can they not address mental health issues and make policies that ignore the impact of our mental health on disease treatment? Both the state and city of New York have come together and worked with their constituents to provide a level of service that enhances our lives as people living with this virus. Under Bush's plan, New York will be penalized because they stepped up to the plate and supported our needs. These are the things we need to stabilize our lives.
These clauses will disrupt an infrastructure we have that works. Legislators, whether they are Republican or Democrat, need to be responsive to community needs. As a former immigrant who does not have access to a green card because of my HIV status, I am not allowed to vote in this country. But I have friends who help carry my voice and my needs. We need more people to pay attention and send a message to those in positions of power about these wrong-minded policies.
Robert Macomber was born in Lexington, Va., but was raised in New Jersey. He entered Naval service in 1970 and became a hospital corpsman. Following discharge he attended the Pennsylvania State University physician assistant program. In the early 1980s he began a career with the U.S. Department of Justice Federal Bureau of Prisons at which time he saw his first patients with the then-new disease HTLV3, later known as HIV. In 1989 he joined the New York State Department of Corrections where he continued his clinical and academic study of HIV/AIDS. Mr. Macomber is certified by the National Commission on the Certification of Physician Assistants as a correctional health professional, by the National Commission on Correctional Health Care and as an HIV SpecialistTM by the American Academy of HIV Medicine. He currently sits on board of the Academy's New York/New Jersey chapter.
According to Robert:
National statistics indicate that 30 percent of all HIV-infected people in the United States will spend time in a correctional facility some time during their infection. I work in correctional medicine. When my patients are released from prison they have little or no resources to pay for their medical care and medication. Without the Ryan White Act, many of these patients will be lost to follow-up and stop taking their medications. This has huge implications for the local and regional health care systems as these patients become ill due to disease progression. Fully funded Ryan White Act has, and can, help prevent this from happening.
Alice Myerson, CPNP, MSN, is the primary care coordinator of the Adolescent AIDS Program at Montefiore Hospital in the Bronx, N.Y. She is a nurse practitioner who specializes in the care of adolescents and young adults who are infected with HIV or who are at risk for HIV.
She has been a nurse since 1972 and a nurse practitioner since 1995. She has worked with persons with HIV infection since the beginning of the epidemic in 1981. She has seen the devastating effects of this illness on young people in the Bronx and has seen the remarkable resilience of youth who grapple daily with the complexities of this disease.
According to Alice:
I treat young people with HIV infection between the ages of 13 and 24. Over the past five years we have changed the orientation of our program from one of palliative and aggressive support to a chronic illness model. It is no longer the expectation that youth with HIV infection will die prematurely. Rather it is our goal to teach young people how to live with a chronic illness, how to live full, productive and meaningful lives within the context of this illness.
Our program is now built on a multidisciplinary, transition model. We work as a team that includes social workers, medical providers, a psychiatrist and a nutritionist and a full-time HIV counselor. We instituted a "Celebration of Life" festival this year to acknowledge the accomplishments of our young people who graduated from our program at age 24.
Our patients all have had incredibly difficult and challenging lives. One third of our patients have perinatal HIV infection. The other 2/3 acquired the disease through sexual exposure; the young men acquired it in the main through male-male sex and the young women through male-female sex.
Out of 81 of our patients, 46 have had experience in the foster care system; 23 have experienced the death of their mothers; 46 have been suicidal at some point; 25 have had experience with the criminal justice system.
Clearly youth with HIV infection are vulnerable youth who have suffered extensive trauma in their lives. The trauma of childhood, indeed, the dismemberment of innocence and dream, leaves them with emotional scars and multiple mental health problems. With treatment and support, with the collective care of the small village of our program, many of our patients transform themselves and turn their lives around. Six of our patients, for example, are attending college.
Our program relies on grants from both the federal and state government. Some of our funding comes from the Ryan White Care Act. Our grants enable us to provide comprehensive care to these young people with such complicated medical and social needs. Our medical care is built on the attention we pay to the social needs of our patients. Suicidal patients don't take their HIV medications. It is difficult to provide follow-up to patients who are homeless.
The achievements we have made over the past decade rely on funding sources such as the Ryan White Care Act. We have made HIV testing routine among young people in the Bronx. High school students are aware of where to go for testing. We teach them the importance of sexual choice whether it is to use condoms or to defer sexual intercourse. We emphasize in our counseling the importance of relationships and self worth. We are innovative in our ability to get youth to come in for routine STD testing. We know that if we decrease chlamydia rates, we can decrease HIV rates. New York has been exemplary in the identification and treatment of pregnant HIV-positive women. We have decreased the rate of perinatal transmission to less than 1 percent.
Of course there are many challenges that we continue to face, many difficulties that lie before us. But it is my belief that federal funding such as the Ryan White Care Act that allows all communities to individualize their HIV programs is an imperative if we as a society are to continue to move forward in the 21st century.
Cuban-born and Chicago-raised, Carlos A. Perez has been HIV positive since the late 1970s. He knows he's been positive that long since he was part of a clinical trial in the late 1970s and blood samples were taken. When HIV testing came out in 1984, his blood samples were tested for HIV. So Carlos is a living testimony to the entire history of HIV treatment. He uses his own life stories and treatment experiences to educate other HIV-positive people about their options, both personal and medical.
After a 10-year gap in his work history due to being on disability, Carlos began working for an organization called Better Existence with HIV (BEHIV), one of the few agencies that hired people who were HIV positive and would understand why he would have such a long period between jobs. From there he moved on to Test Positive Aware Network to edit the Chicago HIV Services & Professionals Directory. Test Positive Aware Network's services are all peer-led, so being open about his HIV status there was just a natural part of the job.
However, cuts in the Ryan White CARE Act put that program in jeopardy -- in fact, there is not one dollar in Chicago now for information dissemination, which is the grant that paid for the directory. So those cuts led to him leaving Test Positive Aware Network to work with ACCESS Community Health Network (ACHN) in his new position as Rapid HIV Testing Program manager. ACCESS is a health care organization that establishes clinics in neighborhoods with high populations of people who are underinsured or have very minimal health care benefits. The program he manages is a new demonstration project, funded by the CDC (Centers for Disease Control and Prevention), that's working to incorporate free rapid HIV testing into a point-of-care test to aid in the diagnosis of HIV infection, along with other tests that people get with their annual physical, just like pap smears, breast exams and prostate exams.
According to Carlos:
My tip for the newly diagnosed is to realize that you just found out you're positive during the best possible time. Not politically, of course, but in the best time as far as options for treatment and knowledge about when to start on meds.
After I found out I was positive I received so much help and support from my community and through the Ryan White CARE Act, mainly from HOPWA funding for my apartment. However, I was lucky that I had disability medical benefits from my employer, if not, I would have needed ADAP as well.
The reauthorization is troublesome for us in the HIV health care field because we know how it will negatively impact our friends, communities and possibly ourselves. There is no guarantee that my health will stay on the "positive" track. If I were to become ill from an opportunistic infection or should my meds stop working for me -- the scenario could keep on snowballing -- I would be in a position to have to apply for aid again. Knock on wood I hope this does not happen.
The administration's idea of taking money from the northern states to share with the southern states is horribly wrong. This will only cause an increase in the need for more resources and funding for the people that will fall through the cracks up in the north. Also, flat funding dollars that are to be shared are just not enough. I have many friends currently on aid from the Ryan White CARE Act and they worry about what is to happen in the near future; they rely on HOPWA and ADAP dollars.
The fact is that the administration keeps coming up with money for the war in Iraq by stealing money from the CARE Act and other programs that are in place to help disenfranchised Americans. However, billions are given for hurricane relief and even last year when the tsunami hit Indonesia and Sri Lanka, the United States started a competition with other countries in how much money they could send them. It is ludicrous that we can come up with billions of dollars for other causes -- most of which are worthy ones -- but we cannot take care of our own Americans living with HIV.
The proposed formula change in state-based funding is very scary when you take into account states that are forecasted to lose so much money. For example, Illinois could lose up to $4 million in state funding, California could lose up to $20 million and Florida could lose up to $6 million.
The CARE Act is not adequately funded today. If it were, we would not have these disparities. Congress is slated to work on the reauthorization as we speak and hopefully complete it by the end of this year. The Patriot Act, with its built-in pork is providing over $25 million to build a bridge in Alaska. If we can afford that, we can afford to properly fund the Ryan White CARE Act, which saves so many lives.
Many of the patients she cares for lack insurance and are only able to receive care and treatment thanks to funding provided by the Ryan White CARE Act. Only about 5 percent have Medicare or Medicaid. "Being poor, out of work, no medical insurance, sometimes no place to live are common in our setting," she says. "If I can ease some of their fears and barriers and have my patients trust me, that is an accomplishment I am very proud of."
Some of her patients come from other states without making plans before coming here. According to Purcell,
We have to explain that all states are not uniform in their Ryan White HIV programs; some states have more money than others. I remember telling one patient that she would be better off going back to New York, because she [wanted] housing, food, furniture, transportation and medications. But that may change if the new funding guidelines are enacted.
I am very thankful for the existence of the Ryan White CARE Act, but at times disappointed by the bureaucracy, because often the people who make the decisions don't understand what it's like to be in the trenches. For example, the AIDS Drug Assistance Program (ADAP) often lacks standards in judging how much an individual pays. To me, a perfect ADAP would be to assess the uninsured individual and have them pay a portion on a sliding scale, based on their income or ability to pay. There are many HIV-infected people that make just over the income requirement, but cannot afford a $1,200-$1,500 drug bill every month. People have to continue to eat, pay utilities, house/rent payments, etc. It seems the system is for the poor, not for the people working and contributing to society. I certainly believe the poor need help, but working people do too.
I would also like to see the ADAP program work with several local pharmacies to dispense medications. That would cut down on much of the confusion in the clinics. Patients would then also understand what it is like to call ahead and sometimes wait at a pharmacy. This is done in Baltimore, Md., with much success, I understand. The same could also be done with services. I am not saying to completely eliminate clinics, but Ryan White could contract private doctors to see HIV patients and I think this could work well.
Our clinic is in a public health setting. There are sometimes barriers to signing up for ADAP. Patients are sometimes slow in bringing in the required paper work. At times staff is less than cordial to patients. I think all HIV providers should stop and put ourselves in our patients' shoes. This is a life and death situation and health care providers should do all that's possible to help these unfortunately uninsured individuals.
Hopefully, one day, there will be universal health care and all will be treated equally. Until then, the Ryan White CARE Act helps provide necessary care and treatment for HIV/AIDS patients and should be reauthorized and funded at a level that helps keep pace with the changing nature of this disease.
Donna Sweet, M.D., is currently Professor of Medicine, University of Kansas School of Medicine -- Wichita; Director of Internal Medicine Education at Via Christi Regional Medical Center -- St. Francis; Medical Director, UKSM-W MPA HIV Program; Principal Investigator/Director, The Kansas AIDS Education and Training Center, Wichita, Kan.
Other relevant professional activities include: Past National Chair of the Board of Governors for the American College of Physicians-American Society of Internal Medicine and is currently a member of the Board of Regents. Dr. Sweet was recognized by the American Medical Association with the "Pride in the Profession" national award in 2000; honored as one of the "Shocker Top 40" by Wichita State University, an honor given to 40 graduates of the last century.
According to Dr. Sweet:
The Ryan White CARE Act provides critically-needed funds for life-saving medications and medical follow-up, as well as case management and social services, which are essential in this patient population. Without the services that the CARE Act provides, I could not provide quality care for my patients, and we would find many more individuals going without services and becoming very ill. The services that are provided by the Ryan White CARE Act help them cope with this devastating disease and continue to lead productive lives.
Although he has been a physician assistant since 1987, Wes Thompson didn't begin to focus on HIV until the early 1990s -- when one patient in particular changed his life forever. "It was spring of 1993. I was just learning about HIV," Wes recalls. "He was the third HIV patient I had met. I didn't recognize him at first, and then he said, 'Don't you recognize me?' And I realized I had known him 15 years earlier."
Wes says that, at that moment, he envisioned Christ knocking three times at Peter's door -- this long-lost friend, his third-ever patient with HIV. It was an image that, Wes says, told him to "pay attention." Wes realized that the missionary-type work he had sought all his life was right in front of him -- as a health care worker treating people with HIV. "We both cried, and it was then I realized that taking care of HIV patients was my mission field, my calling," he says. "I have never doubted it since."
Though Wes describes himself today as "not overtly religious or spiritual," he says that "each person's pursuit of their individual path to the holy excites me. I believe in a creative force that many would call God. The greatest gift is life in the here and now, and we must make the most of it. I tell my patients, 'Part of your health is going to be forgiving yourself. You did nothing wrong in getting HIV. I don't do guilt, so let's get that out of the way. If you don't have any guilt, you're way ahead of the game.'"
Wes learned his own lesson about guilt at age 19, when he was in college and struggling with his homosexual feelings. He had sought both medical and religious "cures" for his homosexuality. Finally, believing he was an "awful reprobate," as he puts it, Wes was on the verge of taking his own life. But a voice in his head told him to stop -- that he was exactly who and what he was supposed to be. "A peace washed over me that I can't explain," he says, "and my tears turned to laughter."
And also, years later, into hope and healing for the HIV-positive people who would one day come to him for their care.
Today, Wes works at the Jemsek Clinic in Charlotte, N.C. His patients range from the transiently housed to the well-to-do. They include straight, gay, transsexual and a mix of urban, suburban and rural. According to Wes, the number of immigrant patients is increasing every week and he sees many poor patients and African-American women.
He comments on Ryan White CARE Act Patients:
I see lots of patients who pay for their care through Ryan White and the North Carolina AIDS Drug Assistance Program (ADAP). The rest are a mix of Medicaid, Medicare and private insurance. I see a few deaf patients where I use sign language and their issues are the same as those who can hear and speak.
Currently, I am serving on the American Academy of HIV Medicine Southeast Chapter Board of Directors, the Regional AIDS Interfaith Network Board of Directors, and on the Ryan White Continuous Quality Improvement Committee (CQI) for our local AIDS Service Organization, Metrolina AIDS Project.
Ryan White has been flat funded for the past three years while the number of patients without access to care has increased. The cost of care has increased exponentially. The president has recommended the Ryan White funding remain the same, i.e., flat funded yet again. Title I through Title IV is focused on health care with no emphasis on prevention, education or testing. Not only do we need to have the funding increased, we need to change the focus to emphasize prevention, education and testing.
Title I, which was originally designated as emergency funding for a specific set of large metropolitan cities, has continued at the same funding unchanged to those cities. For example, the number of cases in San Francisco has actually decreased but they are still being funded for people who have actually died. The southeast is leading the nation in the number of new cases of HIV and AIDS, and without any additional funding. This disparity in Title I funding should be corrected to accurately reflect who needs the monies.
On a personal level, the number of patients waiting to be enrolled in Ryan White is growing. There are so many that our local ASO is no longer able to maintain a list. We do not have the monies available to fund anything much beyond the cost of labs.
Dr. Aimee Wilkin is Associate Professor of Medicine at the Wake Forest University School of Medicine in Winston-Salem, N.C., and directs the Ryan White EIS Title III and Title II programs of the Infectious Diseases Specialty Clinic at Wake Forest University Baptist Medical Center. In conjunction with the medical director of the clinic, Dr. Wilkin supervises the care of over 1,000 patients living with HIV in the region. She also maintains her own clinical practice.
Dr. Wilkin graduated from the University of Texas Medical Branch in Galveston, Texas, in 1994. Training in internal medicine and infectious diseases followed at the University of Cincinnati. From 1999 to 2001, she was on faculty at Johns Hopkins University, where she participated in the Johns Hopkins AIDS Service, with particular focus on the Johns Hopkins AIDS Service Counties Program, which provides HIV specialty care throughout the state of Maryland in collaboration with local health departments and primary care providers. In 2001, she completed a Masters of Public Health from the Johns Hopkins University School of Public Health and Hygiene.
According to Dr. Wilkin:
Our HIV Clinic serves about 1,000 patients from Forsyth and surrounding counties [in North Carolina]. Most of our clients are African American and most are uninsured or under-insured. Each year we have increasing numbers of new clients. By the time we first received Ryan White funding as a sub-site of the University of North Carolina's Title III Program in 2001, we had more than exceeded our clinic capacity.
Over the next two years, it became clear that we needed more help in order to reach the needs of our community. We first obtained a Title III planning grant, which enabled us to assess the needs of our HIV-positive community and plan for how to expand our clinic. This process also brought together organizations in our region that, while serving the same people, had never met in a comprehensive fashion to discuss challenges and strengths together.
We now work within the auspices of several different titles of the Ryan White CARE Act. We are in the first few years of our own Title III EIS Program, which has allowed us to expand clinical staff, focus them on HIV primary care and expand specialty services. Due to the rapid growth of the epidemic in our region and the realization that we absolutely had to maximize our available personnel and resources, we were able to receive a Title III Capacity Development Grant, which will allow us to strengthen our ability to fully utilize our medical information systems, provide high-quality care and measure our outcomes in a way that allows us to progress and meet the changing needs of our patients.
We receive Title II funding through the State AIDS Care Unit, which has allowed us to further expand the availability of HIV primary care services in our clinic. Recently, in recognition of the increasing rates of HIV transmission in our region and the importance of addressing prevention needs within our own clinic population, we are taking part in a large Special Projects of National Significance project to operationalize practical strategies for assessing and changing sexual behaviors that increase the risk of HIV transmission.
We also benefit from the ready availability of expert and energetic staff devoted to addressing educational needs of all providers who care for people living with HIV. Examples of their creative help include training our new nutritionist in HIV-specific nutrition issues and providing ongoing education and technical assistance to a small, free clinic we are working with in High Point, N.C.
We are a large part of the HIV safety net in our region. None of us have excessive resources, but through cooperation and coordination with other local agencies, we are able to provide high-quality HIV care. The Ryan White CARE Act funding in our region does not, and should not, replace other resources, and it cannot possibly meet all our patients' needs, but it is absolutely essential to the existence and functioning of our clinic, as well as multiple organizations that provide HIV care and services in our region. The Ryan White CARE Act has allowed us to expand and develop the depth and breadth of HIV primary care services we can offer. I could not envision how we could function safely without it.
A specific story: When I look at the Ryan White CARE Act at a personal level, I think of my patient, James G. James came to us about four years ago, following a lifetime of drugs and addiction. He has HIV, hepatitis B and hepatitis C. He was homeless and had no family here -- he came to our community to get away from his past and start again. He began attending our clinic, went through a publicly funded drug rehab program and worked with his Title II-funded case manager to find housing through the Housing Opportunities for Persons with AIDS program and resources for basic daily needs through private and state resources. James began HIV medications at a time when our state AIDS Drug Assistance Program (ADAP) had a waiting list, so our clinic staff accessed medications through patient assistance programs. Later, he was able to receive therapy through ADAP and then, much later, Medicaid.
James has done very well on medications, regaining most of his health and a new sense of purpose in his life. He helped develop our Community Advisory Board, devotes himself to speaking out about HIV in our community, and has progressed from being a resident of a small apartment complex for people living with HIV to being the manager of the complex and working for a local AIDS service organization. While James has benefited directly from Ryan White CARE Act-funded services, he has given back so much more to our community -- a true success of the Ryan White CARE Act.