20 years . . . and again it's time to fight to change the status quo
I am sure many of you read stories or gave interviews at key milestones during the history of this disease. Yet as I have read the stories and given interviews over the last two months, I keep catching myself in a long pause as I stop and really fathom that number -- 20 years. We have lived and worked through one of the greatest health challenges in the history of humankind. We will continue to meet the challenges by treating patients and guiding public policy.
When asked, "What do you think is the next issue in HIV?" without hesitation I answer, "The next issue is already upon us -- improving the quality of care!" As this disease has become more treatable, it has brought us to a crossroads that will literally define whether patients thrive or suffer in the face of this disease.
Treatment for HIV disease is one of the fastest-evolving areas in the entire medical field. Repeatedly we have seen treatment paradigms literally reverse course in a period of six months. In this issue we summarize a recent study demonstrating that physicians with more experience treating HIV give higher quality of care (see Study in this issue). Other studies continue to document that patients actually survive longer and have a higher quality of life with an experienced HIV physician. Also in this issue we summarize a study on the increasing rate of new HIV infections (see Rates in this issue). Yet at this crucial time, we continue to see more experienced HIV physicians exiting the field for reasons ranging from patient load, to reimbursement issues, to lack of professional standing.
So we have a disease with growing patient needs that will require more knowledgeable and more skilled clinicians yet is experiencing decreasing service capacity. How do we begin to turn this situation around and reach our mission of improving the quality of care, especially since quality of care is such a broad area to affect? We begin by doing what we have always done in HIV -- we carve out an area we can change, and we take a stand. For frontline HIV treaters that meant forming an independent group, the Academy, with a clear mission to improve the quality of care, which then started by creating a standard of measure for the HIV Specialist.
To improve the quality of any industry, product, or procedure, you must first define what you want to provide, set a standard of measurement, and then measure it. In the case of the HIV Specialist, that means first creating a Core Curriculum that defines the critical knowledge an HIV Specialist should know, then developing a tool to measure that competency, which leads to a standard national definition of an HIV Specialist. The Academy began that process by announcing a definition of an HIV Specialist in February (see Definition in this issue). The Core Curriculum Educational Objectives (see cover story in this issue) are being released this month, followed quickly by a short self-assessment tool to measure competency on the 28 most recent educational objectives in the Core Curriculum. This process will culminate this fall when the Academy begins to certify HIV Specialists.
It all sounds so logical, doesn't it? After 20 years of treating this disease, a diverse group of experts come together and reach consensus on a critical level of knowledge and a standard national definition for the purpose of ensuring quality care in a complex disease. It is the course most specialties have followed in becoming recognized. Yet after 20 years, unfortunately there is disagreement and indeed opposition to this process. Other established medical professional organizations have already come out against the Academy's stance on measuring quality and certifying specialists.
This is not a surprise -- in fact, it is actually predictable. We have seen this many times in HIV, and indeed in a variety of other industries. Any time a group within an industry joins together to create a standard of quality, the existing establishment opposes it. For example, J.D. Powers is now the established institution to measure quality for the auto industry and has now branched out into many other industries. Yet in its first few years, almost every automotive company and even their suppliers fought its representatives, disputed its legitimacy, and even took it to court. For the existing establishment, measuring quality and submitting to that measure were extra steps beyond the status quo.
In HIV care, the status quo enables anyone -- with any level of experience -- to use the label "HIV specialist," and it serves physicians who do not see a large number of patients or do not keep up-to-date. The status quo is not serving all patients well! In HIV care, we have all fought the establishment for 20 years to bring quality care to our patients. We fought to be able to treat our patients with dignity, to offer them more and better treatments, and to have those treatments covered by insurers. Now that we have reached the point that HIV can be treated, we are fighting the status quo so that our patients can see a qualified specialist as measured by an established industry standard.
The Academy's staff, board members, and I have received a great deal of feedback on the definition and certification process, even in these early stages. In the case of defining the HIV Specialist, the status quo is being maintained by a variety of well-intended, well-established players. Health plans have traditionally fought defining a specialist and paying them accordingly. IDSA's HIVMA and IAPAC have both publicly opposed our certification process. Government has been slow to define, certify, or back a definition of an HIV Specialist because those activities are usually done from within the industry. Both national and local AIDS organizations, while supportive of our organization and not opposed to the definition or certification, have not been quick to endorse it either, with no expertise within this area, no resources to research the issues, and pressure from other professional medical organizations.
However, just as in the J.D. Powers example, the momentum has already begun to shift. Health plans have begun to consider a definition, and a few are beginning to work with the Academy or utilize the expertise of our members to aid them in defining quality care within their plans. Government departments and legislative bodies have consulted with us on a definition. And numerous AIDS organizations have begun to support the Academy's definition of an HIV Specialist.
The status quo of no standards and no definition has not and will not improve the quality of care for our patients. The status quo does not help them understand and find quality care, but defining and measuring critical knowledge and certifying specialists will. The Academy will begin to certify HIV Specialists this fall, because the Academy is the only organization ready, willing, and able to change the status quo.
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