We are pleased to present this symposium featuring commentary from participants in the “Between Complacency and Panic: Legal, Ethical and Policy Responses to Emerging Infectious Diseases” conference held on April 14, 2017, at Northeastern University School of Law. The conference was sponsored by the Center for Health Policy and Law and the American Society for Law, Medicine, and Ethics (ASLME), with support from The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. Stay tuned for more posts!
By Kaci Hickox, MPH, MSN, RN
As new cases of Ebola in the Democratic Republic of Congo (DRC) are announced, I am reminded of the importance of applying lessons learned from U.S. quarantine policies during the 2014 West Africa Ebola outbreak. I watched the suffering of entire families and communities facing the largest Ebola outbreak in history. During my Ebola training in Brussels, I will never forget hearing an Ebola expert explain, “Remember to have compassion because this disease turns peoples’ loved ones into a biological hazard.” I remember the moment I understood Ebola with my heart, not merely my head, when a young woman admitted to the Doctors Without Borders/Médecins Sans Frontières (MSF) Ebola Treatment Unit in Bo, Sierra Leone, explained, “Nineteen of my family members have died of Ebola.”
Yet, in the midst of extreme fear and suffering, I also witnessed the profound courage of the staff responding to stop the outbreak. On my last day in the unit we had celebrated the discharge of 39 Ebola survivors. Offering isolation, testing, and treatment for persons who developed symptoms of Ebola was necessary to stop disease transmission and finally, after two years of response, the outbreak was declared over in December 2015! In this globalized world, we must be prepared to react not only to Ebola, but to any infectious disease threat with courage instead of fear, science instead of politics.
How do we ensure courageous responses to infectious disease threats?
- Fight outbreaks at their source. The West Africa Ebola crisis highlights the importance of a global response to outbreaks at their source. Not only is this important from a humanitarian perspective, but it is also vital because diseases do not stop at borders. If we are wise, we will invest today in public health and medical infrastructure in places that are currently ill-equipped to respond to infectious disease threats. As Dr. Paul Farmer explains, we should invest in the “four S’s”: 1) staff (properly trained and compensated health workers), 2) stuff (medical equipment), 3) space (a clean and sanitary environment to treat patients), and 4) systems (infrastructural and logistical organization). Also, to fight outbreaks at their source we must ensure that those willing to respond are protected when they return to the U.S.
- Quarantine based on medical and epidemiologic principles. For Ebola, quarantine is not necessary because a person with Ebola does not become infectious until after they show symptoms of the disease. In the U.S., no community transmission of Ebola occurred from the four people diagnosed with Ebola (Thomas Eric Duncan, Nina Pham, Amber Vinson, Dr. Craig Spencer), even though none of them were quarantined prior to developing symptoms (note that transmission to the two nurses represents healthcare transmission, not community transmission). Experts in quarantine law and ethics explain the framework for making quarantine decisions (read more about quarantine frameworks here, and here) because in the past there are examples of quarantine being applied unfairly and even resulting in increased spread of diseases. One important principle in the framework is the least restrictive effective measures should be used to protect the public from infectious disease threats. For Ebola, the least restrictive effective measure is active or direct/active monitoring, as the U.S. Centers for Disease Control and Prevention (CDC), the European CDC (ECDC), and many other experts recommended during the West African Ebola Outbreak (CDC, ECDC, NEJM, here, here).
- Prevent political overreach through due process. I returned to the U.S. days before mid-term elections and found myself facing politically-driven quarantine policies. Sitting in a tent in New Jersey and then having a state trooper parked outside my home in Maine, I learned how vulnerable we are when our civil liberties are taken away and we are not ensured due process. It was only after a bike ride that the State of Maine Department of Health and Humans Services obtained a temporary court order for my home-quarantine, which allowed me the opportunity to have my case reviewed in a court of law. Unfortunately, many states did not pursue official quarantine orders and individuals being quarantined were not allowed their due process rights. Quarantine orders must be pursued through official means to ensure the proper checks and balances and prevent politically motivated quarantine policies.
- Support persons who must undergo quarantine or isolation. Individuals who are faced with quarantine or isolation are vulnerable and must be offered basic protections and clear communication. This should include information regarding their right to an attorney, tests or procedures that may be required while they are detained, visitation with family (facilitated in safe manner), and the right to due process as described above.
Although these may seem like obvious steps for an administration considering an extreme policy like quarantine, these lessons come from my personal experience returning to the U.S. after having treated Ebola patients. The chaos and confusion around me made me not only scared for myself, but also horrified at the thought that my colleagues would have to endure the same. This is when I came to realize that sometimes a nurse needs an attorney. Humanitarian aid workers need an attorney. We need our legal system to protect public health and global health efforts and ensure that aid workers are protected from fear-driven policies.
Many healthcare workers respond to meet the needs of communities and patients who are suffering from a public health crisis. Some may ask, “Are you afraid?” Our answer is twofold. Yes, at times we are afraid. But that fear is ultimately overwhelmed by science, training, skills, and maybe most of all the belief that we must fight for the lives of others. I could not express this sentiment better than Franklin D. Roosevelt who said, “Courage is not the absence of fear, but rather the assessment that something else is more important than fear.” This courage is not as unique as you may think. After all, the average person admits to being fearful of electricity, while also trusting that an electrician is capable of providing us this specialized service we all depend on. This is not unlike the average person being afraid of Ebola who trust and depend on specially trained healthcare workers to care for their loved ones when the need arises.
It is not merely medical, epidemiological, and public health experts who must work to ensure we can respond to public health threats. The legal community is also necessary to protect civil rights and public health principles. I remain thankful for the support of my attorneys Norman Siegel and Steve Hyman, along with my local counsel in Maine, David Soley, whose support resulted in our triumph over a quarantine order in the state of Maine. On October 31, 2014, Judge Charles LaVerdiere of the Maine district court ruled that the state had not met their burden of proof, which was to show that I was a public health threat. Today we need attorneys who are willing to support healthcare workers responding to global health needs.
To those fighting Ebola today in the DRC, this picture that was sent to me by my team in Bo, Sierra Leone says it all. It gave me courage and today I hope it reminds you, “We are with you.”