The Importance of Advocacy for TB

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The Importance of Advocacy for TB

• Carol J. Pozsik, RN MPH
• Executive Director,
• National TB Controllers Association

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Disclosure

• I do not have any real or apparent conflict(s) of
  interest that may have a direct bearing on the
  subject matter of this continuing education
  presentation.
• Carol J. Pozsik, RN MPH

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The Importance of Advocacy for TB
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Advocacy for TB takes many forms

• Lobbying by Organizations to the US Congress
• Talking to Friends, Neighbors and Strangers on
  airplanes about TB
• Belonging to groups dedicated to TB Elimination
• Stop TB USA (formerly NCET)
• RESULTS International
• NTCA/NTNC/NSTC
• American Lung Association/American Thoracic
  Society

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Begin by Looking Back, Then To The Future

• TB began to naturally decline in the United
  States in the early 1950s
• TB had become treatable with the first drugs
  Streptomycin and PAS (1940s), INH (1950s)and
  Rifampin in 1970s.

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Perception of TB in the 1970s

• Sanitoriums were closing
• Outpatient treatment became more common
• Perception TB was going away
• Gradual de-funding of TB programs began
• 1972 Categorical Funding for TB was eliminated
  restored less amt. 9 years later

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Recipe for Later Disaster

• Large city public health departments closed TB
  Clinics and eliminated public health nurse
  positions
• No one to do follow-up
• This contributed to what was later to be the
  HIV/TB epidemic in New York City

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TB/HIV Double Trouble

• New York City Epidemic (80s Early 90s)
• American Lung Assn went to Congress and lobbied
  for funding to fight TB/HIV
• Millions went to New York City
• States benefited from this increased funding

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Cases increased, then slowly declined

• Drug development was almost non-existent
• TB Vaccine was nearly an impossible dream (20 yrs
  away)
• DOT was new but not widespread nor well accepted
  across the U.S.
• TB Control needed to do something different

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A Strategic Plan for the Elimination of TB in the
United States

• 1987 Secretary of HHS established an Advisory
  Committee to the CDC for the Elimination of
  Tuberculosis (ACET)
• Made up of public health professionals, private
  medical sector, and Federal agencies concerned
  with Tuberculosis.
• 1989 the Strategic Plan was completed and
  targeted TB as a public health problem.

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The Goal

• A case rate of less than one case per million
  population by the year 2010
• An interim case rate of 3.4 per 100,000
  population by the year 2000
• The case rate for 1987 was 9.3 per 100,000

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The Plan

• Improve Methods for Preventing Disease in
  Infected Persons
• Improve Methods for Identifying Infected Persons
  at Risk of Disease
• Improve Methods for Treating Disease
• Improve Methods for Diagnosing Disease

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Progress Report

• In spite of hard work , developing guidelines,
  and new technologies
• Interim goal in 2000 3.4 cases per 100,000 pop.
• Actual 2000 rate 5.8 cases per 100,000
• Elimination goal by 2010 rate of 1 case per 1
  million population
• Actual 2005 rate 4.8 cases per 100,000

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1998 Institute of Medicine Report

• CDC asked the Institute of Medicine (IOM) to
  investigate why TB was not moving toward
  elimination
• Months of interviewing, site visits, and study of
  the good and the bad of TB programs
• 2000 IOM Report Ending Neglect was published

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IOM Predictions as We Move Toward TB Elimination

• Cases will decrease and so will funding
• Increasing pressure to cut TB funding
• TB programs may cry loudly for the need for
  continued funding, but at higher levels in public
  health departments or legislative assemblies, the
  tendency will be to cut funds for other
  priorities

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How Many Will It Take To Eliminate TB in the
U.S.? (IOM)

• 528 million per year to achieve TB Elimination
• 320 million now to regain control of TB

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If We Knew Then What we Know Now

• We did not know then about our future competition
  with Flu and Bioterrorism
• We must continue to be strong advocates for TB
  funding

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IOM Recommendations 1998

• Need necessary funding to move toward TB
  elimination
• Effective advocacy may prevent the total
  de-funding of TB programs as happened in 1972
• Need new tools vaccine, replace skin test,
  genotyping, new drug development for shorter more
  effective regimens

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New (and old) Threats

• MDR TB and now XDR TB
• Foreign born TB (inadequate or no overseas
  screening)
• Patient population sicker more difficult to
  treat as outpatients
• TB Medicaid Option does not cover hospitalization
• Experienced staff leaving for pay or retirement
• Persistent cuts to Federal TB funds (last five
  years) must be recovered by CDC to fund TB
  programs and research.

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So What Can I Do to be an Advocate?

• Im a Federal, State or local government employee
• What are my limitations I dont want to lose my
  job because I have done or said the wrong thing
• I want to do my part for advocacy for TB

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Be a Better Educated Advocate
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Hatch Act of 1939

• U.S. Federal Law prohibited persons paid with
  Federal funds from using promises of jobs or
  promotions for personal gain
• Amended 1940 to include state and local employees
  whose salaries contain Federal funds
• Interpreted differently by each Federal, State
  and Local Agency

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I THINK Im not allowed to be an Advocate for TB

• I am employed by government and cannot ask for
  money for my TB Program.
• I cant speak personally to my Members of
  Congress about my TB Clinic or I will get into
  trouble with my agency.
• I am afraid to belong to a certain political
  party and work with them to improve public health.

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What should I do?

• TALK TO A SOMEONE WHO KNOWS
• Find out what the rules are for your agency
• There are variations in the interpretation of
  the Hatch Act from state to state and agency to
  agency
• Discuss what you can and cant do, BEFORE YOU DO
  IT

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What many states will or will not allow their
employees to do?

• As a citizen you can speak, write, e-mail or fax
  to your Members of Congress about the TB problem
  in your community, state or the U.S. (This is
  just education and concern)
• You can give news articles or other information
  to them or their aides to educate about TB in
  your community
• Ask others to ask for money for programs

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Who Can Talk on Behalf of TB?

• National TB Controllers Association (NTCA)
• American Thoracic Society (ATS)
• American Lung Association (ALA)
• RESULTS International
• Stop TB USA (formerly NCET)
• Friends, Persons of influence, Constituents of
  Members of Congress

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Our Future in TB Depends on Advocacy

• IOM Prediction will come true
• As case decline, so will our funding
• Funding will disappear, but TB will not!