About a quarter of the estimated 1.1 to 1.2 million Americans infected with HIV don't know it. Recently modified testing guidelines from the Centers for Disease Control and Prevention ( CDC ) , when they are aggressively implemented next year, will dramatically increase both the number of people who know their status and the demand for care. It will place an even greater burden on a system that is struggling to meet the needs of existing patients.
John Bartlett, the noted Johns Hopkins University HIV specialist, served as co-chair of a conference of the leaders in the field who grappled with those opportunities and challenges at a meeting in Washington, D.C., on Nov. 29-30.
He said that previous testing guidelines were developed in 1985 when no therapies were available. 'Now, at a time when we have very good therapy, especially when people start early, that is inappropriate,' he stated.
Mike Saag, director of the HIV clinic at the University of Alabama, Birmingham, said those who start treatment with a CD4 cell count greater than 200 have a mortality rate of 4% to 8% at the end of eight years, while those who start treatment with a CD4 count less than 200 have a 35% to 50% mortality.
Three-quarters of those in his clinic first show up with a CD4 count less than 200, because they are not getting tested. The one exception is pregnant women, who have been offered opt-out testing for about five years. Their CD4 count is about 400. That has made Saag a firm supporter of routine HIV testing.
'AIDS today is a Black disease, plain and simple,' said Phill Wilson, CEO of the Black AIDS Institute. 'Of those 40,000 new cases, over 20,000 of them are Black. We have to get Black folks and Black institutions to take ownership of this disease.'
When some suggested that he is stigmatizing Blacks, Wilson replied, 'The stigma is there. Denying the facts are not going to get us through the stigma issue. You have to call it for what it is.'
CLINIC CRISIS
Most of the people who find out they are positive will be unemployed, dependent upon public resources for medical care, 'and the number of slots in existing clinics for HIV infection may be limited to the point we can't handle them,' said Bartlett.
'Our clinic is at capacity, and the reimbursement is exceedingly low,' said Saag. 'If we were to charge and collect everything owed us, it would be $360 per patient, per year…Ryan White funding is critical [ to make up the difference ] , yet clinics like ours have been flat-funded for the last seven years, despite a 50 to 70 percent increase in patient volume.'
As HIV testing is made routine and more people learn their status and require services, 'how are we going to take care of these patients? Where are the clinics going to find the capacity to do this?' Saag said, 'We can't have a fixed pie, there has to be increased dollars to provide care.'
Money is the immediate concern, but that can be resolved relatively quickly. Other demands will require more time to implement. In developing countries, the need to create health care infrastructure and train personnel is a major limiting factor in expanding treatment. That also could become a challenge in the U.S. with increased testing for HIV.
'On the front-door side, we have increased our capacity for providing routine screening in the District of Columbia by 150% since June,' said Marsha Martin, who heads up HIV prevention and testing in D.C. In those five months, more than 16,000 people have been screened and 580 persons with HIV identified. That is a rate of 3.5%—three to four times the national average—85% of whom are Black.
'This is increasing the demand for supportive counseling services…and is changing the daily burden [ of counselors} because it is telling more people that they have a life-threatening disease.' She said that has led to increased support for counselors.
'Dr. Martin talked about the front door, let me talk about the rest of the house,' said Saag. 'Who is going to provide the care?'
'I am concerned that we could be on the verge of a larger epidemic. I don't know that the 25% [ estimate ] of undiagnosed patients is accurate. In Alabama, my sense is that it is higher than that. The majority of our patients are showing up late for care' with low CD4 counts suggesting they became infected 10-12 years ago.
'Fewer numbers of young people are interested in doing HIV care,' and the most altruistic are drawn overseas. Saag said, 'Attracting young physicians, young nurses into the field is very difficult because they go to the clinic and see people working from 6:30 in the morning to 8:00 at night, every day, filling out prior authorizations for Medicare, doing ancillary work because the support services aren't there.'
'Health care workers are burning out from the workload and they need help now, especially in light of the onslaught of new patients that is likely to come their way.'
'The whole universe of who is focusing on HIV/AIDS is getting smaller and smaller. It is not just the number of folks, but the who,' added Wilson. He is concerned that lessons learned in the 1980s—comprehensive prevention, community mobilization—will not only be lost, they will be ignored.
'HIV is the most exciting filed there is in medicine. But it is also the poorest paying field, by far,' said Bartlett.
Later in a private conversation, Saag acknowledged that there is much to be excited about for a researcher, but not so much for the regular physician. Part of the reason is because reimbursement is low, but also because a significant portion of the patient population is harder to work with—less likely to keep appointments and adhere to regimens, and more likely to develop resistance, hence requiring more complicated regimens.
