After a career as a physician in public health I find myself impelled to offer a public apology to quite a few patients, only a fraction of whom I have treated. I have been offering up my apologies to individual patients for a few years, but somehow it doesn't seem to be enough. The situation starts with my description of a particular diagnosis and treatment plan, "Your TB is unfortunately due to a TB germ resistant to the two most powerful drugs for treating TB (INH and rifampin). We call it multi-drug resistant, or MDR-TB. I am confident, with the help of the nurses and other TB clinic staff, that we can cure your TB, but we will need to start you out on a 2-year course of treatment with daily injections plus oral medications. This treatment will almost certainly save your life and within a few months allow you to spend time with your family and friends without putting their health at risk. Because TB spreads through the air if not cured, we have no choice as public health providers - we must cure your TB or restrict your activities to prevent others from catching this disease. I will stop talking now and want you to ask any questions you have about the diagnosis or treatment."
I know to be prepared to answer questions about possible side-effects of treatment since these are the rule, not the exception. The short explanation is, "The side effects that are frequent include nausea and vomiting, difficulty with concentration or depression, tingling or numbness in your feet, and some degree of hearing loss. Most of these can be tolerated or managed using other medications, but you need to tell us about any symptoms because severe side effects include liver damage, kidney damage, severe depression or psychosis, seizures, permanent nerve damage, loss of vision, irreversible hearing loss and thyroid deficiency. Every dose of the medication five days per week for the next two years will need to be observed by one of our staff members, either in the clinic, at your home or at some other location because the consequences of failure may be untreatable TB; we call this Directly Observed Therapy (DOT)." Knowing this treatment will probably be one of the most difficult tasks they have undertaken, I would usually follow up with, "I am sorry you have to take this treatment, but it is the best we have available." This expression of sympathy suggests I bear no responsibility for having to offer an unacceptable treatment regimen as an unavoidable option.
In fact, I bear some responsibility for this situation. I saw one of the earliest MDR TB cases in Mississippi in 1978, a young woman who was infected in a high school outbreak of TB due to a strain resistant to the three drugs used during the 1960's -streptomycin, PAS and INH. Prior to this outbreak, drug-resistant TB was thought to be relatively harmless. During treatment her TB bacteria acquired resistance to rifampin, meeting the criteria of MDR today. Despite her untimely death due to MDR-TB, I failed to recognize the full implications of this outcome. The myth of less virulence among drug-resistant TB germs was further debunked with the outbreaks of MDR-TB that occurred in the 1980's and 1990's in New York City. What followed next was a global increase in MDR-TB to an estimated 480,000 patients globally, only 10 percent of whom are cured.
The apology that I have shared with a few patients begins, "The drugs we are asking you to take will include one or two newer drugs that have been inadequately studied for TB but they appear to have worked well in New York City in the 1990's. These include fluoroquinolones and other new antibiotics licensed for other infections. We had over 400 patients per year with MDR-TB in the 1992, and our national government officials proposed to develop new safe and effective regimens for drug-resistant TB. Unfortunately 25 years later I and my colleagues have not been successful in convincing our policy makers to bring this about. Most of the drugs we use were developed over 50 years ago and were abandoned 40 years ago when INH and rifampin were shown in to be less toxic and more effective. When MDR-TB appeared, we pulled these drugs out of the historic waste-bin."
The response from some patients has been to reject my apology and instead express gratitude for finally being cured of MDR-TB, particularly those who have been unsuccessfully treated before. The response of others is more gratifying to me: anger at still having no option for a safe and effective regimen and a desire to prevent future patients from suffering though the MDR-TB regimen of the 1990's.
I have erred in spending nearly three decades in what I see now as the "TB rut:" 1. Failing to imagine far better tools for diagnosis and treatment, 2. Allowing immediate cost issues to overwhelm the potential and real benefits of better treatment, and 3. Failing to engage patients and communities in TB elimination efforts.
I was the medical director of a HIV/AIDS clinic from 1900's when the early effective HIV regimens were developed. From my TB rut I could not imagine global use of the early HIV regimens that were effective yet were prone to failure without near-perfect adherence, such as DOT. HIV/AIDS care providers instead imagined what could be accomplished with well-tolerated Highly-Active Antiretroviral Therapy, have focused on the lifetime benefits of nearly ideal regimens rather than the immediate cost issues and have engaged with highly motivated and active patients and community members to ensure timely access to safe and effective regimens used both here and around the world. Treatment for HIV/AIDS has progressed at such a dizzying pace since the mid 1990's that AIDS is far easier to manage now than MDR-TB or even diabetes mellitus. DOT is not needed with a robust regimen.
It is long past the time that I and my colleagues should continue to use and teach younger colleagues to use these weak and toxic regimens. I participated in the recent revision of a 275-page book that is appropriately called "Drug-Resistant Tuberculosis: A Survivors Guide for The Clinicians." It doesn't have to stay this way.
I now offer my public apology in the hope that more patients with MDR-TB will quickly transition from being grateful for compassionate though brutal treatment, to anger at being left in the lurch. I hope my colleagues, many of whom treat far more patients with MDR-TB than I have seen, will join me in apologizing to their patients in the hopes of engaging the thousands of patients we treat in a call to action on MDR-TB. The National Action Plan to Combat Multidrug Resistant Tuberculosis will only be effective if implemented. The United States should be playing a major leadership role in addressing this growing global health disaster.
- Marks SM, Flood J, Seaworth B, Hirsch-Moverman Y, Armstrong L, Mase S, Salcedo K, Oh P, Graviss EA, Colson PW, Armitige L, Revuelta M, Sheeran K; TB Epidemiologic Studies Consortium. Treatment practices, outcomes, and costs of multidrug-resistant and extensively drug-resistant tuberculosis, United States, 2005-2007. Emerg Infect Dis. 2014;20:812-21.
- Curry International Tuberculosis Center and California Department of Public Health, 2016: Drug-Resistant Tuberculosis: A Survival Guide for Clinicians, Third Edition pp246-75. Access at: http://www.currytbcenter.ucsf.edu/products/drug-resistant-tuberculosis-survival-guide-clinicians-3rd-edition
- Reves RR, Blakely D, Snider D, Farer L. Transmission of multiple drug-resistant tuberculosis: Report of a school and community outbreak. Am J Epidemiology 113:423-435, 1981.
- Frieden TR, Fujiwara PI, Washko RM, Hamburg MA. Tuberculosis in New York City--turning the tide. N Engl J Med. 1995;333:229-33.
- The global spread of MDR-TB and XDR-TB may eventually threaten much of the recent progress made in TB control. See World Health Organization, "Drug Resistant Tuberculosis." http://www.who.int/tb/areas-of-work/drug-resistant-tb/en/.
- For a summary of the ongoing failure to implement the 1989 national TB elimination plan see: Reves RR, Nolan CM. Tuberculosis elimination in the United States: an achievable goal or an illusion? Am J Respir Crit Care Med. 2012;186:i-iii. Also: http://www.thoracic.org/advocacy/stop-tb/Eliminate_TB_USA.pdf
- See http://www.huffingtonpost.com/entry/tuberculosis-mdr-tb-treatment_us_56211f2be4b06462a13bc8fd
This post is part of the 'The Isolation of Airborne Cancer' series produced by The Huffington Post for World TB Day. This series will look at the devastating issues surrounding tuberculosis, the number one infectious killer. To follow the conversation on Twitter, view #WorldTBDay.