If I hear or read another proclamation about the "HIV treatment cascade" and the need for more research to understand engagement in care, I am going to scream! There, I said it. It seems this cascade -- described initially by Laura Cheever at HRSA and most recently and formally by Gardner and colleagues -- has taken the HIV world by storm. It has captivated the field of HIV practitioners, advocates, researchers and scientists and peppers nearly every lecture at conferences and conversation at the watercooler. But why?
My growing frustration with this new scientific obsession is related to calls for more research to understand and address the cascade. As a CDC-trained epidemiologist, I am a stalwart champion and advocate for research. Research has its place, just not in this area. My experience as a clinician who sees these challenges playing out on the ground day after day has me convinced we don't need more research to explain it or identify interventions. To those who argue for more research, I say: We know these barriers all too well. The cascade describes phenomena we have been witnessing in our daily struggles to link, engage and retain people in care for two decades. Furthermore, the literature is rich with data describing predictors of adherence and barriers to engagement in care, including drug addiction, mental illness and lack of social support. Instead, we need program implementation, policy changes and modification in resource allocation to confront previously identified challenges we have yet to address.
Just last week, a 57-year-old male was diagnosed in our emergency department, but refused linkage because he didn't believe he was HIV positive. Although he was sexually active, he did not consider himself at risk for HIV. A 23-year-old man was diagnosed and linked, but refused medication because he heard "somewhere" the medications would make him sicker than the disease and that, if he ever stopped the medication or missed a dose, he would become resistant to all treatment options and die of AIDS. Finally, a 34-year-old woman diagnosed five years ago was recently linked to care and diagnosed with PCP. She was lost to follow-up for six months and returned requiring hospitalization. She stopped her medication because she grew tired of hiding it from her family. These are the reasons for the gaps in the cascade and the solutions don't require more research. They require services, support and education to address HIV-related stigma throughout the health care industry and within the community.
Adding to my frustration is knowing that we are trapped in a system we created. Funding allocation -- be it governmental or private -- largely does not address stigma, shame and denial. Our priorities are elsewhere and our sights are often set on following specific guidelines, templates and processes and developing deliverables, SMART objectives and beautiful logic models. Meanwhile, the community is wandering around in ignorance about the availability of treatment and the ability to live a normal life with HIV infection.
I recognize that saying the cascade gaps are driven by stigma, denial and shame sounds clichés, and for some it surely elicits eye rolling, but the negative perceptions within the health care industry and the community are directly impacting willingness to test, link, engage and adhere to HIV care and treatment. So, what are we going to do about it? We can never know everything about the gaps, but we already certainly know enough. Let's change the way we are talking about this cascade. Let's talk about structural interventions like implementing strategies to normalize HIV testing and facilitate linkage to care in primary care and other medical settings. Let's create sustainable collaborations with mavens and visible people like actors, hip hop artists, athletes and elected officials to improve HIV literacy. Let's change our approach to and funding strategies for HIV-related training to achieve more actionable and concrete outcomes that impact the way people think about and address HIV.
I know addressing community and provider HIV literacy is not as sexy as an observational or randomized study. Doing so pushes us beyond our comfort with the status quo and the familiar. We excel at identifying and characterizing a problem, only to then call for more research to further characterize the problem. We have to change. We speak eloquently about ending the epidemic and having the tools to do so. But if we really mean and believe what we are saying, we have to change and operationally address these challenges. If we don't, we can forget ending the epidemic. Then I really will have something to scream about.
Comment by: Gail Flack
Tue., Aug. 13, 2013 at 12:13 pm UTC
Thank you for the wonderful article on a well-needed topic. Research is great for many things. Without the research we wouldn't have the medications we have today. However another barrier to getting good care is lack of knowledge by the case managers, resident doctors, and other support workers in the field. Misconceptions are rampant within the HIV positive community and are often played out in the waiting room at the doctor's office. Some resident doctors don't give out correct information and without an educated staff, these misconceptions continue. Research can't graph that. Stigma, discrimination and shame are variables that are not easily measured through research. Education of persons providing care is paramount for successful outcomes.
Comment by: Jackie_Blue
Mon., Jul. 8, 2013 at 6:55 pm UTC
Let's not forget the people that fall in between the cracks. Those without out insurance for whatever reason that don't qualify for federal and state programs. Been 3 years since I've had insurance and could afford medications. I make too much to get help from ASO's. Was just denied an individual insurance plan again. Was hopeful that new health care laws would help, but it's looking less likely.
Comment by: ItsMe-Red
Wed., Jun. 26, 2013 at 11:24 am UTC
Well said and well written.
Comment by: THOM Collins Colvin
Tue., Jun. 25, 2013 at 6:29 pm UTC
Dear Dr Fitzpatrick,
I found your article both informative and educational. My life with HIV exposed in 1983 at 16. I live with an CDC diagnosis of HIV/AIDS diagnosis today and agree 100% the disease and those living with or newly exposed are getting lost in AIDS business 21st century. My only issue is your speaking of living longer with meds available. Today. Ones Quality of life trum. quantity. I lived a healthy no OI life starting AZT in 1989. I suffer from neuropathy in toes and feet because of it. So came DDI then CRIXIVAN. Need I go on.
My point is since the MIRACLE Drugs came out in mid 90s I have needed more added on pills for HIGH CHOLESTROL BP Fatty Liver. 40 percent blocked heart artery, three hip replacements, anti depressant iron deficiency etc. Personally I think the meds out WORK at first but most patients wake up one day like myself and question thier TOXCICITY on our systems. I am not proposing STOP ALL MEDS to u or your rreaders. I am hoping people start paying attention to the therapies and/or side effects while trusting thier drs. Ask questions as no one has all the answers
Comment by: ranjan
Fri., Jun. 21, 2013 at 2:10 am UTC
I agree such news only create and subsequent disclaimers or that any success is actually decades away is rather inhuman to say the least in playing with the emotions of the affected. Have you noticed so many breakthrough news from reputable agencies, like the israeli scientists, draco, washington university, even the berlin patient to name a few and faded away. No further news or follow up. Of interest is the berlin patient. Did they wait for decades of data to think out of the box?
I would like to ask if a life threatening epidemic were to threaten mankind and give only 6 months time, would we still talk of cure decades away or make a concentrated effort to find a solution. It is this apathy and lack of urgency that is frustrating that medication is there to hold it despite its side effects and so we can take our time in finding a cure. There is no unity in tackling it and finding a cure despite so many breakthroughs announced.
Comment by: Jeannette Southerly
Mon., Jun. 17, 2013 at 10:42 am UTC
This was an excellent article and so true. Being from a rural area with lots of substance abuse, mental health problems, stigma and poverty, I don't need research to "identify" the issues. As stated in your blog one thing that needs to happen if for HIV testing to be routine. In order for this to happen, especially in rural areas, funding needs to be provided. Thanks for stating the obvious that seems to be overlooked.
Comment by: Jeannette Southerly
Mon., Jun. 17, 2013 at 10:26 am UTC
This was an excellent article and so true. Being from a rural area with lots of substance abuse, mental health issues, stigma and poverty, I don't need research to "identify" the issues. As stated, HIV testing needs to be routine. In order for this to happen everywhere and especially in rural areas, funding needs to be provided. Thanks for stating the obvious that seems to be overlooked.
Comment by: SA
Sun., Jun. 16, 2013 at 12:07 am UTC
Time to have cure for it. No more delays. Isn't there a single this much intelligent human on this planet who could have got a clue of it after this long of research on it.
Comment by: priscilla
Fri., Jun. 14, 2013 at 4:34 am UTC
ilove wat she has addressed, in my country, people think ARVS are a cure to HIV, and so more people are getting infected, and we are doing PMTCT, but more babies are getting infencted, the mothers sero convert during pregnancy and breast feeding because their husbands never disclose their status because of stigma, its a pity that our Govt cries for treatment and social aspects that are affecting prevention are not addressed.
Comment by: Jeff Berry
Thu., Jun. 13, 2013 at 2:22 pm UTC
Thank you Lisa, once again, for your uncanny ability to cut through all the BS and get down to the nitty gritty. Many of us working in the field share your same sense of frustration, it seems at times as though we're just spinning our wheels. Thank goodness for voices like yours, we need more of them!
Comment by: Ken Warnock
(Royal Oak, MI)
Sat., Jun. 8, 2013 at 5:05 pm UTC
Thank you for addressing this topic. With the advent of medications that are more effective and more tolerable, as well as significant advancements toward a functional or sterilizing cure, HIV could be controlled, and ultimately eliminated. Transmission routes for HIV infection have been known since the mid-1980's and the knowledge of how to protect yourself from infection just as long. It is the real, or perceived, discrimination associated with stigma, criminalization and shame that is the greatest hindrance in an effective HIV prevention and treatment campaign. Thanks, again!!