At the Centers for Disease Control and Prevention (CDC), a newly reported disease with a rare lung disease captured the attention of a handful of people. People were dying of an unexplained illness of sudden onset. Around the world, France, Uganda, and some European countries reported similar findings. A pandemic of infectious disease had been identified.
This was an important CDC meeting in which Dr. Robert Redfield presented symptom data from US Army recruits, proposing six categories in the natural history of this disease. Dr. Mary Guinan disagreed, presenting data on the multi-system impact of this new disease on infants and young children, suggesting young children were not immune. Perinatal transmission was suspected. as well. A California epidemiologist presented data on a constellation of symptoms from those to refine the case definition, summarizing data from Dr. Tony Fauci’s lab at the National Institutes of Health, National Institute of Allergies and Infectious Diseases (NIH, NIAID). Collaboration was key to solving this mysterious disease.
The year was 1984. Déjà vu?
In 1981, this global pandemic, was first reported in the CDC the Morbidity and Mortality Weekly Report, (MMWR)report, , from a cluster of men in New York and San Francisco. I was a new hire as a national expert on fluoridation and was asked to attend this meeting.
At the meeting, Dr. Guinan and I were the only women in the room, but that is another story.
Dr. Guinan’s data was precise and convincing, ensuring that the case definition was changed to include tracking of cases among women, pregnant women, and children. Natural history studies of the disease were discussed, based on Dr. Redfield’s data, and were applied to more diverse populations, sending epidemiologists scurrying for determining best methods for future studies. Monitoring the status of the disease was something else. A pathogen was identified from France by Dr. Luc Montagnier at the Pasteur Institute.
By April 1985, the first AIDS conference was held in Atlanta, sponsored by the World Health Organization (WHO) and the Department of Health and Human Services, with CDC as coordinator. Back then, Dr. Fauci had black hair. We listened to him and Dr. Jim Curran, of CDC, discussing methods to prevent the spread of HIV/AIDS. For a scientist discovering something new, this was fascinating. I was the only dentist in the room, but there were plenty of people there from other health professionals. Multiple disciplines of microbiologists, virologists, immunologists, pulmonologists, pediatricians, internal medicine epidemiologists and acute care specialists were coming together taking their piece to solve this scientific puzzle. Our mutual goal was to collaborate to find ways to stop the spread of the disease.
Until Rock Hudson, a famous Hollywood actor, died late that year, many people in the US did not know about HIV/AIDS. By December 1985, dentists were becoming concerned about HIV/AIDS and the first recommendations to prevent perinatal transmission of HIV/AIDS were published by CDC. By 1986, the virus causing AIDS was officially called HIV (human immunodeficiency virus).
In 1987, testing for HIV and treatment for HIV with zidovudine (AZT) was approved by the Food and Drug Administration (FDA). By December, the WHO stated that an estimated 8-10 million cases of HIV/AIDS had occurred globally . By 1989, over 145 countries had reported.
Later, in the 1990s, a group of sentinel surveillance studies were suggested to assess how prevalent this disease was and how quickly it was spread. Testing in a sample of hospitals, drug treatment centers, prenatal care, medical professional offices, and community health settings were conducted. This would better help to detect where the virus was spreading in what community and how quickly if funding could be found.
Fast forward…in 1998, the FDA approved over 17 drugs against HIV/AIDS, resulting in a “cocktail” of different drug treatments, turning HIV into a chronic disease. My assignment then was to the Surgeon Generals’ office, contributing to the release of the first oral health report. My other job was to coordinate guidelines for use of these same drugs for preventing perinatal transmission of HIV/AIDS. It was the highlight of my career, to work with my boss there, Dr. Eric Goosby, on this miraculous breakthrough for nearly eliminating perinatal transmission of HIV in the US and the very first oral health report.
Fast forward to this year’s pandemic, COVID-19. It is digital, not analog, speed.
As we think about how this story of HIV/AIDS compares to COVID-19, the timeline for collaboration is astonishing.
Instead of more than 2 years from first identifying the disease to discovering its viral cause, it was less than a month from identification of COVID-19 as a disease to sequencing the virus for developing a test for SARS-CoV-2. Three months later, WHO called COVID-19 a pandemic.
In our pandemic planning at CDC since 2001, after 9/11, I knew the next step after WHO’s announcement was the Surgeon General declaration of a pandemic, which happened in March 2020. Research on treatments accelerated. By October 2020, there are now a handful of drugs that had received emergency use authorization from the FDA for treatment of COVID-19, sending the death rates from this disease plummeting.
With HIV/AIDS, dentists first became very concerned about HIV/AIDS, along with other health professionals about 1985, four years after the disease had been identified. I participated in the first workplace and health care recommendations for preventing transmission of HIV/AIDS, fielding multiple calls from dentists around the globe about the best way to protect themselves. By 1986, I was the first author of my first contribution to the MMWR, Infection Control Guidelines for Dentistry. In contrast to the five years between 1981 to 1986, CDC developed COVID-19 specific interim guidance in just over 3 months from the time that the virus was identified.
By now, I would have thought that there would be an army of dental professional to follow me. Sadly, just a few dentists are participating in these efforts. Maybe, in Part II, I can inspire you to be one of those investigative epidemiology dentists to work on new and emerging infectious diseases to ensure safety for ourselves and our patients, now, and in the future.
COME HOME SAFELY
“Know the truth” is one of the tenets of public health. Data is the “truth” and that is the science on which prevention of disease is based. Science rules. We learned that from HIV/AIDS, and Ebola. Now, we are learning that about COVID-19, but the analog systems for data collection, warehousing and reporting need to move to digital. This includes integrating dental and medical data collection, and reporting systems. This is what epidemiologists need.
Population-based data is what epidemiologists love most of all to prevent disease and illness. No, epidemiologists are not skin doctors; rather, they are population-level disease experts with specialized training. Veterinarians, nurses, physicians and, yes, a few dentists, are epidemiologists. It takes 20 years to be a good epidemiologist, and we are in short supply among dentists. The Epidemic Intelligence Service (EIS) is accepting a new class for 2021, so do you want to apply now? These are the lieutenant epidemiologists in training. Read on.
Data is the currency of epidemiologists, whether it is HIV, H1N1, Ebola or COVID-19. For example, more than 281,000 died today from this particular coronavirus, or SARS-CoV-2, the virus that causes COVID-19. The systems for reporting this data, however, are not as robust as they should be. There might be more deaths than those reported since collection and analysis of COVID-19 data from the Centers for Disease Control and Prevention (CDC) were migrated to the Department of Health and Human Services (DHHS) overnight. Carefully built systems to capture data were disrupted, when, in one day in July 2020, it was announced that hospital data would be sent to DHHS, instead of CDC. No training was provided. Then, abruptly at the end of August 2020, the data collection went back to CDC, confusing everybody. That is an epidemiologist's nightmare, as data is lost and not captured. It’s like having no compass in the night on a boat. You have no idea where you are or where you are going.
Now, hospitals are kind of strapped in terms of personnel and funding to report data anyway, especially since this new peak in infections in the middle of this pandemic. Let’s just say they are distracted with the new surge in infections right now. This is more chaos that they didn’t need, but they are really in an analog world still. Data from labs and medical insurers are not included in data collection; data reporting is voluntary, and, sometimes, the state Medicaid data is tricky to get too. State health departments are overwhelmed as well and unfamiliar with technologic fixes. What does this mean? All data collection needs to be digitized and migrated to anonymized “Big GIG data.” It needs to include oral health data too.
Cases of disease that conform to case definitions are what hospitals, and other health facilities report (but not dental clinics) to the CDC. Early in the HIV/AIDS epidemic, deciding on the case definition of HIV/AIDS was a whole series of CDC meetings, like the ones that Drs. Robert Redfield, Mary Guinan, myself, and many others participated in back in the early to mid-1980s. These are described in the Part 1 of this two-part article. Carefully, we built the best and most perfect system for collecting, reporting, and analyzing data on any disease of the 55 reportable disease systems at CDC. But it was costly, requiring weeks of epidemiology and training of hospital and health department staff in that analog world. We don’t have that kind of time with COVID. We need to move from analog to digital, now.
Based on science, the case definition for HIV/AIDS changed through the years, as our clinical knowledge of progression of disease, its viral cause and the impact on the immune system became known. First, it was Kaposi’s sarcoma and pneumocystis carinii pneumonia, then it was expanded to include other rare, immune compromised conditions. Finally, it included a viral test and T cell count, after we identified the virus and got testing approved by the Food and Drug Administration (FDA). An ELISA test followed by a confirmatory Western Blot test was the laboratory criteria. We used this definition to build the perfect system for surveillance at CDC.
As science evolves, we change the case definition of diseases. A dental example of this is what European dentists did a few years ago for defining stages of periodontal disease, with the Americans limping behind to catch up. The science of periodontal disease dictated that change in definition, long overdue. Clinical data informing good epidemiologic data helped us change that definition. We epidemiologists knew from clinical experience that data from NHANES, a cross sectional study, only measured one quadrant of periodontal disease. It was changed to include select teeth in every quadrant, overcoming leadership challenges in the US. But still, the NHANES data took years to “clean” and analyze, so it took years to find that the data just measured patients at one point of time and didn’t help us predict how to best prevent disease. Longitudinal data and immediate, electronic migration of data might help with that in the future, but I digress.
With COVID-19, we don’t have time for developing a perfect system, and the perfect is the enemy of the good right now.
With COVID-19, we don’t have time for developing a perfect system, and the perfect is the enemy of the good right now. We need a good, quick, and reasonably accurate electronic system for data collection. Now.
The hopeful news of two new vaccines approved and four Phase III trials underway is thrilling. The challenge right now to epidemiologists is that there are 35 to 40 million doses of COVID-19 vaccine, not the anticipated 300 million by the end of the year. Even these have some manufacturing and processing bottlenecks, as well as the practicalities of transport in super cold storage for the Pfizer and Moderna vaccines. Yes, it is great that both the FDA and CDC are moving so fast to get these vaccines out but the timetable will be longer than we thought.
So, who gets these new vaccines? Last week, the Advisory Committee on Immunization Practices, a panel of outside experts hosted by CDC, made recommendations of who gets the vaccine first1, building on the National Academy of Medicine prioritization released in October 20202, 3, 4. Some blogs are advocating that dentists are essential workers and should get them first. My own feeling is that frontline health workers should get them, people who work in the ICU, say respiratory therapists. First responders go next, and then, other health workers, like dentists, hygienists, and assistants.
This means that we still need to use enhanced infection control practices in dentistry. In 2014, and 2015, I was privileged to train health care workers on infection control to contain the Ebola outbreak from coming to our shores. Unlike COVID-19, which has a case fatality rate of 0.5-3% in most studies, Ebola has a case fatality of over 70%with good hospital systems, worse without, maybe 90%. With twenty-one of my colleagues, many of us, like me, who had left government service, I was called back to train over 100 Public Health Service officers to go to West Africa to treat patients in special Ebola Treatment Units. When we trained on donning and doffing, we updated a hemorrhagic diseases manual for making our own PPE, that had not been updated since the mid-1990s. Although we got the final manual at 2 am for the 8 am training start, we knew the stakes were high, plus we wanted the officers to be properly trained. “Come Home Safely,” said a makeshift banner at the secure training room Homeland Security facility.
At the time we did the Ebola training, I didn’t know that we would be training learners on donning and doffing here, nor how this training on gowns, and shoe covers would be so relevant so soon, because of COVID-19. Our motto was “Come Home Safely.” We made another makeshift banner at the bunkhouse that said the same thing. At graduation, I cried when I gave my treasured Appalachian Trail neck scarf to the young Amish nurse who had struggled with her head covering, when doffing in the training. “Come Home Safely,” I whispered to her, smiling through my tears. She smiled, more confident than ever. When she got back to the States, she emailed me that she did come home safely; I smiled. That is the quiet reward of epidemiology, I said, my back still sore from the bunkhouse bed.
I hope I can inspire you to be one of those investigative epidemiology dentists to work on new and emerging infectious diseases to ensure safety for ourselves and our patients, now, and in the future. Now, we are saying, “Come Home Safely,” every day from your dental office. So, please consider being a dentist in the EIS program. We need to be ready for the next pandemic.
Like a tree, the best time to plant is 20 years ago. As the saying goes, if you can’t do that, plant one now. Think about applying now.
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Dr. Margaret Scarlett is a consultant on infectious and chronic diseases, focusing on disease prevention for government, consumer health companies and health care corporations. She can be reached at mscarlett@scarlettconsulting.com. Note: While she completed the summer course and requirements, Dr. Scarlett is not an official EIS alum. Because she was a single mother, she could not resign from her job to officially join the EIS class in 1985. However, she is most proud of her contribution to the interview, selection and training of over 50 EIS officers during her tenure in HIV/AIDS prevention at CDC.
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