Living with

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Living with Pulmonary Hypertension in developing
countries
Pulmonary Hypertension Latin Society
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Que?

• Pulmonary Hypertension in Spanish

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Pulmonary hypertension Latin society

• PHLS vision and mission are to work until this
  rare condition is known in every Latin American
  country making life opportunities, medicines,
  knowledge and information equally available to
  all patients.
• PHLS is the next step to a process that began in
  Venezuela few years ago, with a non-profit
  organization called FUNDAMIDE, initially
  created to help one patient (Migdalia Denis).
• The scope of this organization was later
  increased and its scope expanded to help other
  patients with the same condition.

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Despierta america interview
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objectives

• Present this project to different organizations
  foundations in the United States and Europe in
  order to pledge for funds that will help us
  accomplish our objectives as outlined in our
  mission and vision.
• Establish and nurture strategic alliances and
  contacts with each country associated with the
  program and to encourage their participation in
  order to facilitate and promote awareness.
• Establish and maintain contact with appropriate
  doctors and medical facilities interested in the
  program, so it can be available to patients in
  the Latin American region.

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objectives

• To establish contact with drug manufacturing and
  distribution companies, and pledge for their
  support through donation of medicines, in order
  to provide better life opportunities to patients
  living in developing countries.
• To negotiate with drug manufacturing companies to
  get lower prices on PH drugs for patients in
  Latin America.
• To find resources available within Latin America
  able to hold meetings and conferences about the
  condition.

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achievements

• Authorization to use Flolan to treat this
  condition in Venezuela. Now, Venezuela has
  authorization to use more than five new drugs to
  this condition.
• The condition was declared as a Public Health
  Problem in Venezuela
• The governments Social Security has subsidized
  the medicine yearly costs for some patients. Now
  all the patients are covered by the Social
  Security.
• Migdalia Denis talked about the condition at the
  Internal Medicine and Pneumonology Congress held
  in February 2002 at the Caracas Hilton Hotel.
  Over 300 doctors attended the congress.

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achievements

• Venezuela was represented for the first time at
  the 5th International Lung Hypertension Congress
  held in Irvine, California in June 2002.
• In July 2002, we were able to convince Glaxo (the
  distributor of FLOLAN) to maintain enough
  medicine stock at least for one patient.
• With help of private persons and entities we have
  been able to obtain treatments for several new
  patients.
• Currently at final stage of construction, our web
  page www.sociedadlatinahp.org, will provide
  information to each associated country. This site
  will provide guidelines, stories and links to
  patients, doctors and clinics where treatment can
  be received.

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achievements

• We have developed relationships with groups of
  patients and doctors from several countries,
  focusing on education and awareness of the
  condition. These countries include Venezuela,
  Mexico, Argentina, Peru, Colombia and Puerto
  Rico.
• The problem has called the attention of the
  general population through the following events
• TV News coverage Televen, Radio Caracas and
  Telemundo (Miami) Despierta América.
• Radio Interview with Dr. Gessen
• Venezuelan Newspapers Quinto Dia, El Nacional,
  Panacea
• Miami Newspapers El Venezolano, El Sentinel,
  Mercado de Dinero.

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THANK YOU FOR YOUR KIND ATTENTION
Pulmonary Hypertension Latin Society