Time is the greatest enemy in the treatment of any disease. The amount of time that passes before a patient is diagnosed, then how much longer it takes for that person to get connected to care, begin treatment, and so on. This could mean the difference between lives saved or lost and costs contained or uncontrolled.
Such is the case with HTLV-1, or human T-cell leukemia virus type 1. The disease was discovered decades ago, yet little has been done to address it. With the absence of intervention, time has allowed its prevalence to grow. Now, more than 40 percent of adults in remote regions of central Australia are infected with the virus.
1. Recognize the disease as soon as possible.
The sooner a new disease — whether it is HTLV-1, bird flu, or a chronic illness such as diabetes — is recognized, the sooner prevention strategies and treatment can begin. The first steps of the process involve identifying those who could have the disease, testing, and determining the surrounding population that is affected.
Most often, the first signs of a disease or outbreak will come from local health-care providers, friends, family members, or the patients themselves. We must empower those who are the front line to speak out when the first signs of illness emerge.
Technology can play an integral role in equipping communities to recognize disease faster. For example, investments in the research and development of low-cost, easy-to-use point of care diagnostic tests can drastically cut down the amount of time needed to go from suspicion of disease to diagnosis. Efforts are already underway by the Department of Defense, U.S. Department of Health and Human Services, and others to support the development of these technologies.
Similarly, mobile health tools can connect patients and providers to report outbreaks, as well as monitor symptoms and disease progression in real time. For example, Maryland deployed mobile health technologies in 2015 to monitor cases of Ebola in the state.
Patients who recently returned from Ebola-affected countries in West Africa used a mobile application to document their temperature, side effects, and travel plans twice daily. Public health officials were able to monitor the reporting of symptoms suggestive of Ebola, and manage the response to the potential cases in near real-time while saving time and resources.
2. Implement preventive and treatment strategies
Identifying and reporting a disease is useless if no action is taken. The U.S. Centers for Disease Control and Prevention (CDC) and World Health Organizations must have the resources to ensure adequate public health responses. These investments are needed now — it’s too late to make quick disbursements of resources in the midst of a public health crisis.
Again, technology can play a role in swiftly linking patients to prevention and care. We should establish the infrastructure to share information long before the need arises. Data must easily flow between patients, health-care providers and public health systems, within local jurisdictions, and to national organizations such as the CDC. This can be complex work, but it is feasible when the right resources and partners are brought to the table.
That said, the U.S. must also think globally to adequately address infectious diseases. Diseases do not know borders — it would be short-sighted to isolate ourselves while diseases affect the rest of the world.
The sooner and the more effectively our global neighbors identify and address a public health threat where and when it emerges, the less likely the disease will spread and affect us at home. That is why we must support global programs and partnerships to support early diagnoses, linkage to care and treatment abroad.
An example of such a program is the National Institutes of Health’s Fogarty International Center, which facilitates global health research. Working with a grantee of the program in Uganda, our team at Hopkins developed the concept for technology to support providers treating patients with HIV, streamlining the flow of information and treatment responses.
3. Adherence and comply with treatments laid out
Finally, it is not enough to just diagnose a disease and identify appropriate prevention and treatment strategies. Patients and communities affected by disease must have access to necessary public health interventions (e.g., health education, vaccines, treatments, etc.) as soon as possible, thereby preventing further spread.
Once these public health strategies are available, patients and communities must sustain their access to and compliance with these interventions. This will often include securing adherence to life-saving medication regimens that can cure or manage the illness.
We can draw from effective strategies used to address other infectious diseases. For example, tuberculosis is a highly contagious and potentially deadly illness. Patients who do not adhere to their treatment regimens risk spreading the disease to others or developing drug-resistance.
For these reasons, the standard of care in the U.S. is a practice called Directly Observed Therapy (DOT) — public health workers watch patients with tuberculosis take every dose of their medication and support them through treatment. Over the last several decades, the number of cases of tuberculosis in the U.S. has dropped from 84,304 in 1953 to approximately 9,300 in 2016. Video technology is playing a role in making this practice scalable.
When addressing existing and emerging infectious diseases, time is of the essence. The faster these three aspects of care can be addressed, the lower the cost and human impact of any epidemic. We must learn from our collective inaction in response to HTLV-1 and support greater investment in the global research and public health capacity to diagnose, access and adhere to prevention and care for infectious diseases, as soon as possible.
Robert C. Bollinger, MD, MPH, is a Professor of Infectious Diseases in the Department of Medicine of the Johns Hopkins School of Medicine, with joint appointments in the Department of International Health of the Bloomberg School of Public Health and the Johns Hopkins School of Nursing. He is the founder of emocha, a mobile health technology company. Dr. Bollinger and the Johns Hopkins University are entitled to royalties related to emocha technology; Dr. Bollinger is a consultant to and holds an equity stake in emocha.