Supporting TB Control
We Are TB is a true TB elimination champion through its efforts in raising awareness about the disease. A personal experience with TB motivated the organization’s founder, Carrie Fritschy, to form it. In November 2012, her 1 ½ year old daughter, Scarlett, began to show symptoms of TB; however, Scarlett’s pediatricians did not immediately think TB when treating the young patient. For months, Scarlett endured months of sleepless nights where her fever would spike as high as 104⁰.
After five months of suffering with fevers, rashes, and pain, Scarlett was diagnosed with TB within days of being tested. The family continued to have sleepless nights as they began the antibiotics to treat TB disease. There were a lot of tears, but for the most part, Scarlett took her medicine at every appointment and progressed quickly. After six months of treatment, Carrie and her husband got the final X-rays saying her lungs were cleared. Scarlett is now healthy and happy and living the life she deserves.
Carrie recounts how scary and lonely the period of time was after they received Scarlett’s diagnosis. The family was encouraged not to share her diagnosis with anyone, which caused them to be afraid of the reactions they might get if they did tell anyone. When they did share with close loved ones, they got mixed reactions. Carrie decided to fight this stigma and bring awareness and education so that those who battle TB disease in the future would have a better support system.
From this experience, Carrie realized that there was not an organized group of TB survivors in the United States to provide education and real life stories that communities can connect to and rally behind. In response to this public health need, she helped form We Are TB as a way for survivors to stay connected and engaged in their advocacy work to educate others on TB prevention and control.
We Are TB formed out of a partnership with the National Tuberculosis Controllers Association, Stop TB USA, and a cohesive vision to create a survivor based community. It developed when the first group of TB survivors met in Atlanta for a communications training in 2015.
We Are TB creates a team of survivors who serve as TB Ambassadors. The organization has three fundamental goals, which are to:
- Provide an informative and supportive community for patients and survivors;
- Share personal stories to drive change at a local, state, and/or national level; and
- Work with the media to provide perspective from a TB patient in an effort to educate the public and reduce the stigma of TB.
We Are TB works with public health teams to educate the American public on TB prevention and control. They believe that the real-life experience and emotional depth that their organization adds to conversations about TB can increase awareness about the realities of the disease.
Amanda Carl is a registered nurse for University of Virginia Health System Culpeper Hospital. She is dedicated to supporting TB control in prevention, education, testing, and treatment. Amanda maximizes resources with partners to provide community protection and care for patients. She has worked to coordinate aspects of patient care between various groups and across a diverse population. These groups include public health leadership, primary care providers, and local hospitals. She has built relationships with local food banks and with social services to provide food and shelter to patients in need.
Amanda regularly supports TB control through increased education to patients and local contacts. She helps individuals understand the difference between latent TB infection and active TB disease. She often works to calm mental health patients who become panicked with testing and treatment options, and refers patients for mental health services, when appropriate. She works to coordinate mental health care and medication interaction safety to assist both providers and patients. It is essential to Amanda that patients feel safe and understand their treatment options and regimens.
Amanda has continued support for TB control in her dedication to employee safety. She educates staff, health care providers, and patients on TB safety and care. Amanda is an invaluable resource in TB control.
Madison Clawson is the Nursing Supervisor in the Infectious Disease Bureau of the Salt Lake County Health Department. He serves on the TB Advisory Committee and the Standards Committee. Madison helped revise the new hire screening protocol, making its implementation smoother. He has been on the panel for the State TB Cohort review.
There are not many managers who would go out of their way like Madison does to help lighten the workload of his nurses. For example, Madison is always willing to make home visits to clients, making it much easier and convenient for his nurses. His knowledge and expertise, with over 15 years in the nursing profession, have greatly benefited the Infectious Disease Bureau and increased the quality of documentation and patient care.
Madison easily bridges the gap when nurses need assistance in communicating with the state on non-adherent active TB cases and refugee coordinating issues. For example, Madison intervened in a process that was being implemented for the state’s refugee community. It was very clear that the process was not working, which would jeopardize the quality and timeliness of care for refugees. Madison raised several concerns regarding this process after discussing the issue with his nursing staff. He approached the agencies involved and was able to bring a resolution to the problem. Madison sincerely cares about his staff and understands the effort they go to when caring for persons with TB disease or latent TB infection.
Charles DeGraw has been an active participant in public health activities since 1967. Through most of those years, Charles has worked tirelessly in the endeavor of TB prevention and control. In the state of Louisiana, Charles pioneered efforts such as detection of TB in newly arrived refugees from war-torn Viet Nam in the 1970’s. He also excelled in detecting TB in people infected with the human immunodeficiency virus (HIV). Charles has supported TB detection in high risk groups as well, including people with low income and those who have lived in congregate housing.
Charles has excelled in his efforts to prevent and detect TB by creating a well-organized system of follow-up for people who need treatment for TB disease or latent TB infection. He has done this in both the public and private sectors of health care in Louisiana. He cites two major contributors to his continued success striving for TB elimination. The first contributor is Dr. Dixie Snider, who presented a challenge to the country to develop new TB tools. The second contributor is the staff of Louisiana’s Department of Health and Hospitals, Office of Public Health for their determination and skills at using those tools to move Louisiana toward TB elimination.
Among Charles’s notable achievements are his accomplishments in recognizing the importance of testing all people with HIV infection for TB infection. He has recognized the invaluable need to offer short term treatment with isoniazid and rifapentine to adults with latent TB infection. Charles has excelled in supporting the widespread use of interferon gamma release assay (IGRA) for detection of TB infection. He has also supported efforts to reach out to the newly arrived foreign-born persons in Louisiana. TB may not only be prevalent among this population; it is often undiagnosed through mainstream health care efforts. With almost five decades of public service in advocating, championing, and serving public health efforts in TB prevention and control, Charles is a true TB elimination champion.
The City of El Paso Department of Public Health’s TB Program is a shining example of TB control. Within the last year and a half, El Paso TB staff have conducted several large scale TB exposure investigations. These investigations included the testing, evaluation, and treatment of over 1680 people. The investigation sites included an elementary school, halfway house, adult daycare, a home health agency, a hospital, and a dialysis center.
Mini clinics were set up at the investigation sites or nearby facilities to ensure affected individuals could have easy access to TB testing services. This model increased participation and speed of testing. It also allowed for the regular health department TB clinic site to continue its normal activity.
Establishing the mini clinics was very successful. In the investigation involving the elementary school, 100% of children with latent TB infection began medication, and 90% of those children completed treatment. In the after-action assessments of the investigations, health officials made recommendations for policy changes to encourage periodic testing of school employees and other employees within high risk, non-healthcare facilities. To increase the speed of the initial response to a TB exposure notification, staff developed a standardized screening/questionnaire tool. This tool has helped prioritize contacts for testing and evaluation, resulting in earlier identification of suspected cases.
New relationships are being developed to conduct targeted testing of populations in El Paso with a high incidence of TB. Through these investigations, the health department has learned the value of collaboration with other programs and the importance of TB prevention.
F. Richard Ervin, MD, South Carolina State TB Medical Clinician, has made significant contributions to the advancement of the state TB program. He incorporated the Tuberculin Skin Test (TST) in 3D online tool (TSTin3D.com) in most patient evaluations. This quantitative estimation of risk of progression from latent TB infection to active TB disease assists in patient education. It also allows nurses to better prioritize case management to patients at highest risk and focus on completion of therapy.
In addition, Dr. Ervin incorporated the immediate use of NAAT (GeneXpert), regardless of smear results, for more rapid clinical decision analysis in persons referred to the program for suspected TB. As the number of non-tuberculous mycobacteria infections has increased, this tool helps to rapidly, and objectively, separate patients who do not represent a public health threat from those with active TB disease who require prompt therapeutic and contact investigation interventions. A recent example was an immunocompromised patient with ongoing diagnoses of recurrent pneumonia prior to identification during a contact investigation. Once identified by the local TB nurse, Dr. Ervin ordered a NAAT regardless of smear result on a sputum specimen. Although smear-negative, TB was confirmed and appropriate measures were immediately undertaken.
Dr. Ervin’s constant advocacy has allowed South Carolina Department of Health and Environmental Control nurses to achieve successful outcomes in TB elimination. He is a true TB elimination champion.
Heidi Hammond-Epstein is the Regional Nurse Consultant for the Florida Department of Health, supporting the Florida Panhandle. In her current position, she provides assistance with nursing case management, mentoring, and training. She also coordinates case and cohort reviews, and provides onsite assistance as needed to the 18 counties located within her assigned area.
With over 29 years of experience, Heidi is a dedicated supporter of TB control. She has provided direct oversight of the daily operations of a high morbidity county health department. She has conducted program development and evaluation including program objectives, measures, and outcomes. She has also provided TB consultation on all components of TB control and patient management.
Heidi has established and built extensive collaboration and community partnerships at the local, state, and national levels that served to promote the mission, values, and goals of the department and to enhance awareness and improve outcomes. She has participated in legal proceedings related to TB; some of these proceedings have required her to collaborate with local and state law enforcement to ensure that public health is protected and follow-up recommendations are carried out.
Heidi’s knowledge of TB and her willingness to teach, educate, and support staff have consistently eased the transition for those who are new to TB elimination. She makes personal visits to the counties that she supports to share her expertise in any way possible. Often times, Heidi spends many hours on the phone working to trouble shoot challenging cases or to help staff with new technologies that have recently been implemented.
Since its inception in 1995, Health Network has demonstrated excellence in its role in supporting TB control in the US. Health Network is the innovative and cost-effective model of bridge case management for mobile patients developed by Migrant Clinicians Network. It provides an important component in eliminating TB in the U.S. Since 1996, Health Network’s TBNet has supported TB control by assisting thousands of patients, moving domestically and internationally, in completing treatment. Because of their mobility, these patients are at a higher risk of being lost to follow-up. Through these efforts Health Network has prevented thousands of new cases of TB in the US and abroad. Health Network ensures continuity of care and treatment completion by providing comprehensive case management, medical records transfer, and follow-up services for patients on the move.
Health Network associates track progress, report back to health authorities, and link patients to services. Health Network provides a unique mechanism for federally funded health centers, local health departments, detention facilities, and other government-funded agencies by assisting their patients who may move before treatment is completed. Health Network also assists with patients who may move before test results can be communicated. Since 2005, Health Network’s TB Net has assisted 1,737 mobile TB patients, with 1,378 completing their treatment. This is a completion rate of 84.0%, which is on par with non-mobile patients.
Using the World Health Organization (WHO) quality-adjusted life year standard, Health Network is also cost effective. Researchers demonstrated that bridge case management for latent TB infection through Health Network is cost effectiveExternal. Health Network is considered an international model for case managementExternal.
What public health staff in Nebraska thought was one patient diagnosed with active TB, soon evolved into a community contact investigation. Fortunately, Julie Rother, Victor Zarate, and Georgina Castaneda, of the Northeast Nebraska Public Health Department, were able to contain it before it became unmanageable.
The patient with active TB disease did not speak English. He was without a support system of friends or family, thus at high risk to leave town without notice. At that time, Julie was the only nurse on staff; however, she worked diligently to maximize resources to help support the patient during treatment. She found charity funds for the patient’s groceries throughout the entire 3+ months and drove him 80 round trip miles weekly to a hospital lab for sputum induction. Community Health Workers, Victor and Georgina, frequently assisted Julie with interpretation, identifying potential contacts, and other valuable support.
The team’s contact investigation identified 13 contacts, five of whom tested positive. Lab tests determined that this strain of TB was Mycobacterium bovis, which is normally found in cattle.
Just as the patient’s lab tests showed 3 consecutive negative tests and the isolation order was lifted after 3 months, a second confirmed case emerged. A 16 year old female who lived 30 miles from the first patient was confirmed as having active TB disease. There was indirect exposure to each other; both people attended the same church.
Julie, Victor, Georgina, the state TB Coordinator, and the state public health lab organized a TB clinic at the church. One hundred members were tested using QuantiFERON blood tests. From the clinic, there were 28 positive and 72 negative tests. A repeat clinic tested 51 of the individuals who initially tested negative; 49 tested negative, and 2 were positive. These patients continue to be tracked.
Julie, Victor, and Georgina learned many lessons from this investigation. Their model’s success depends upon trained Community Health Workers who are trusted by the population that needs testing. The result is outstanding patient care and TB Control.
Dr. Elizabeth Talbot is the current TB Medical Director & Deputy State Epidemiologist for the New Hampshire Department of Health & Human Services, and is an Associate Professor of Medicine, Infectious Diseases, and International Health at Dartmouth.
Following training through the Epidemic Intelligence Service with the Division of Tuberculosis Elimination, Dr. Talbot has worked as a consultant to the World Health Organization (WHO) to develop guidelines to prevent antimicrobial drug resistance for the Global Fund Against AIDS, TB, and Malaria. She has also been a member of STOP TB’s TB/HIV Working Group in Geneva, Switzerland, and acted as an Editorial Board Member for the Consortium to Respond Effectively to the AIDS-TB Epidemic at Johns Hopkins University, Baltimore, MD. Dr. Talbot also has worked as a consultant for the Program for Appropriate Technology for Health (PATH) on a Working Group for Pediatric TB Guideline Revision and Implementation for the Democratic Republic of the Congo and the Republic of Tanzania Ministry of Health.
In addition to her busy schedule as an infectious diseases practitioner, Dr. Talbot has consulted with the Foundation for Innovative New Diagnostics (FIND) in Geneva since 2007, and works with the Stop TB Partnership as a member of the Working Group on New TB Diagnostics. She is actively engaged with Partners in Health to develop infectious disease clinical capacity in Haiti, which has the highest rate of TB in the Western Hemisphere.
Dr. Talbot has a strong background in supporting TB control. She has extensive training in TB epidemiology, diagnosis, treatment, and control. She readily shares and imparts her knowledge to all public health nurses, both state and local. She has also worked closely with not just the nurses, but the entire Division of Public Health & Community Services, as well. Her intelligence and assistance to the New Hampshire TB Program has had a major effect on the quality of care and management of TB cases in the state.
For many years, the Tuberculosis Foundation of Virginia has funded TB outreach workers to provide directly observed therapy (DOT) in several Virginia Department of Health (VDH) public health districts in southwest Virginia. The Foundation has made rent and mortgage payments for patients with TB. Food, utility bills, diagnostic tests, medical expenses, and other incentives and enablers have been covered by this organization. The Foundation has not only helped patients, they have also made it possible for Virginia’s doctors, public health nurses, and health district directors to attend the TB Comprehensive Clinical Courses by covering registration and travel expenses. This opportunity has provided these TB providers with the needed skills and education to provide excellent care.
The Foundation has contributed to improving TB treatment outcomes in many of the state’s most complicated and seriously ill TB patients through research. Since 2011, the Foundation has given thousands of dollars towards therapeutic drug monitoring through serum drug level testing (SDL) for patients experiencing complications with treatment. Last year alone, there were 124 individual tests done for 78 clients. Virginia has been recognized as a leader in serum drug level monitoring. One of the state’s medical consultants presented internationally on the state’s results of improvement with the subsequent increased doses of medication that occur when the drug levels are found below the expected range. This intervention has improved treatment outcomes in diabetic patients.
These findings have also led to enhanced case management strategies for TB patients with diabetes. A training flipchart, “Key Messages for TB and Diabetes” was developed as a direct result of SDL testing. It addresses the relationship between TB and diabetes. This flipchart can play a role in improving diabetes control in Virginia citizens long after TB treatment is complete.
Other contributions that the Tuberculosis Foundation of Virginia has made toward TB elimination include:
- Endowing a professor of pulmonology at the University of Virginia;
- Supporting the physician consult line at National Jewish Health for over 20 years;
- Sponsoring a speaker at Carilion’s Postgraduate Program, annually; and
- Sponsoring the RLA Keeley Award for Humanities in Medicine to an outstanding Medical Student at Virginia Tech-Carilion School of Medicine.
Dr. Richard Wing has been a TB advocate and champion for the last 18 years. He has been the consulting and treating TB physician for Region 11 Texas, which encompasses the southern tip of the state. He also served as the consulting physician for the TB Binational program, “Grupo Sin Fronteras.” In 2015, he treated 158 confirmed TB cases in Texas. He provided consultation to 50 TB confirmed cases through “Grupo Sin Fronteras,” which included 12 multidrug-resistant TB cases.
Dr. Wing is first and foremost a patient advocate. He treats patients with dignity and respect. He takes the time to show patients the disease in their own chest x-ray.
It is known that Hispanics were under-represented in TB trial studies. Roughly 95-98% of all patients with TB in South Texas are Hispanic. Dr. Wing supported and championed having clinical trials in this area. This inclusion of the Hispanic population in TB studies can improve lives. It may also give invaluable insight to better TB treatments.
Dr. Wing is a true champion for TB elimination in South Texas.
The Wisconsin State Laboratory of Hygiene (WSLH) Mycobacteriology Laboratory serves as a primary diagnostic facility and reference laboratory for clinicians and private clinical mycobacteriology laboratories throughout the state. It is also a public health laboratory that serves the Wisconsin Division of Public Health (WDPH) TB Program and local public health agencies. WSLH offers a full spectrum of mycobacteriology laboratory services, including PCR for direct detection of M. tuberculosis complex and M. avium complex (MAC) from clinical specimens. When PCR testing was introduced, WSLH collaborated with the WDPH TB Program to establish guidelines, patient criteria, and specimen collection. WSLH also worked with the WDPH TB Program on protocols to provide fee-exempt PCR testing for Wisconsin patients suspected to have TB. PCR testing has enabled WSLH to identify nearly 70% of pulmonary TB cases within two days. Additionally, rapid identification of MAC allows patients to be released from respiratory isolation, thus saving healthcare dollars.
WSLH has supported WDPH in the investigation and management of TB outbreaks. In April 2013, active TB disease was diagnosed in a Hmong refugee in northeastern Wisconsin by TB PCR. This patient had a large extended family, and diagnosis had been delayed for many months. The household contact investigation revealed several cases, including children. Within days, initial molecular results predicted multidrug-resistant TB. Overall, the investigation revealed 12 active cases of drug-resistant TB. Over 550 contacts were tested at three medical facilities, two work sites, and four schools. WSLH supported the WDPH TB Program during the outbreak by facilitating delivery of specimens to the laboratory, providing prompt and accurate diagnostic and follow-up testing. WSLH also referred specimens to CDC and National Jewish Advanced Diagnostic Laboratories. WSLH provided routine updates on test status and results and assisted with test interpretation.
At present, WSLH representatives continue to collaborate closely with the WDPH TB Program. They discuss specific patient and program needs on a daily basis. WSLH and the WDPH TB Program work together to provide state-wide, multidisciplinary TB educational opportunities for laboratorians, nurse case managers, clinicians, and infection control practitioners. The strong relationship between WSLH and the WDPH TB Program is essential in the support of TB treatment and control efforts in Wisconsin.