The Early Diagnosis Campaign: sometimes it's ph

Thanks to new knowledge and treatment options, the future gets brighter each year for those diagnosed with pulmonary hypertension. However, due to delays in diagnosis, almost 75 percent of PH patients don’t begin treatment until the disease is in an advanced stage.

PHA’s Early Diagnosis Campaign strives for earlier diagnosis and treatment, urging physicians to consider pulmonary hypertension as a possible diagnosis.

Background

Progress in treatment of pulmonary hypertension (PH) and the organization of the PH community has been substantial over the past 20 years. The PH field has progressed from zero treatments to twelve, which is as many or more than all but two of the roughly 7,000 rare diseases. Medical research and knowledge is expanding rapidly. Two medical structures, PH Clinicians and Researchers (PHCR) and PH Professional Network (PHPN), are active within the Pulmonary Hypertension Association (PHA).

And yet, new research using data from the REVEAL Registry shows that there has been virtually no progress in decreasing the period from onset of symptoms to point of diagnosis.1 Today, almost 75% of PH patients are diagnosed after the disease has progressed to Class III or Class IV.2 Data from the REVEAL Registry shows that the mean time to diagnosis is 34.1+1.2 months (2.8 years) and median is 13.6 months (about 1 year). A significant number of patients (15.6%) receive no diagnosis for greater than five years.3

In the 1980’s, the NIH registry showed that without treatment, patient survivability for 50% was 2.8 years. Twenty years ago that was an unchangeable reality for those living – knowingly or unknowingly – with PH. Today, with twelve treatments, that is a tragedy. This is the basis and the background for the initiation of the Early Diagnosis Campaign.

The Plan

The Early Diagnosis Campaign is planned for a five year duration, and the goals are clear.

Goal 1: Establish programs to identify PH early in “high risk” populations
Goal 2: Develop educational tools and resources to facilitate early and accurate PH diagnosis
Goal 3: Define and increase awareness of PH among medical professionals and the public
Goal 4:

Significantly reduce the median time to diagnosis

A three-committee structure will help achieve these goals. Dr. Lynn Brown chairs the campaign, with Dr. Gregory Elliott as Senior Advisor.

Medical Communication Committee | Chair: Dr. Nick Kim, UC San Diego Medical Center

This committee will develop targeted opportunities to communicate with medical professionals through speaking, teaching, publishing or grand rounds. Members will form strategies for connecting with diverse professionals in the medical community.

Education Committee | Chair: Dr. Tim Lahm, Indiana University School of Medicine

Through this committee, PHA will draw on the expertise of the medical community to develop and add early diagnosis information into PHA’s existing education programs, and into those run by professional societies at the national, state and regional levels.

Strategic Partnerships Committee | Chair: Dr. Darren Taichman, Penn Presbyterian Medical Center

This committee will build collaboration with other societies of health care professionals, PH treatment centers and key patient-oriented groups. Collaborating groups will be invited to advance early diagnosis through public relations for their own constituents, scheduling speakers or reaching out to local doctors who can make referrals to PH specialists.

Form alliances with key organizations such as associations of medical professionals and patient-oriented groups for diseases related to PH. Enlist their collaboration in the areas of communications and medical education. Joint activities may include:

  • Providing resource material about PH and its diagnosis and treatment
  • Providing educational speakers or programs on PH and its diagnosis and treatment
  • Providing a stream of news and information generated by the Early Diagnosis Campaign for PHA’s partners to share in their organizational newsletters, emails, websites, etc.

Seek endorsement of the campaign from key organizations who share PHA’s goals. These groups may include medical professional societies, patient-oriented groups for related diseases and PH treatment centers.

Proactively seek media attention for early diagnosis. Continually generate news coverage in the professional community through journals, trade media and in the general media.

  • Build collaborative relationships with communicators at universities and hospitals that have PH centers to make use of professionals as spokespersons and to access key media in local markets.
  • Develop relationships with journalists which is needed to succeed in placing stories. Review their work, gain understanding of their editorial interests, communicate with them regularly, present compelling angles and sources of information and make the press room section of the campaign microsite a hub of information.
  • Pursue varied forms of coverage in diverse media. Coverage may include editorials, personal experiences, infographics, blog posts, news articles and feature stories.
  • Continually monitor U.S. news coverage of rare diseases and other related issues as a means of spotting fresh news outlets, journalists and story angles to pursue.
  • Use coverage as a tool to promote additional coverage by other journalists.

    Involve patients and families in raising awareness of the dangers of delayed diagnosis of PH. PHA’s community has been energized by the campaign launch and has already shown a great desire to advance the program.

Involve patients and families in raising awareness of the dangers of delayed diagnosis of PH. PHA’s community has been energized by the campaign launch and has already shown a great desire to advance the program.

  • Encourage sharing of personal experiences with diagnosis on the campaign microsite, social media and through other PHA channels.
  • Encourage use of campaign messages and materials in special events as well as advocacy and awareness activities.
  • Support and share creative ideas developed by PH patients and families backing the campaign.
  • Provide materials to help patients and families communicate about the campaign.

Sponsor Levels & Benefits

PHA is pleased to recognize sponsors at the following levels for the Early Diagnosis Campaign:

Diamond $150,000
Platinum $100,000
General $25,000

Details will be discussed during individual meetings between PHA and potential sponsors.

View sponsorship benefits


1 Brown, LM, et al. “Delay in Recognition of Pulmonary Arterial Hypertension: Factors Identified from the REVEAL Registry.” Chest. 2011;140:19-26.
2 Badesch DB, Raskob GE, Elliott CG, et al. “Pulmonary Arterial Hypertension: Baseline Characteristics from the REVEAL Registry.” Chest 2010; 137:376-387.
3 Brown, LM, et al. “Delay in Recognition of Pulmonary Arterial Hypertension: Factors Identified from the REVEAL Registry.” Chest. 2011;140:19-26.

 

PH by the Numbers

  • The average time between PH symptom onset and diagnosis is 2.8 years.
  • Many patients will see 3 or more different physicians over a 3 year period before they are properly diagnosed with PAH.
  • 1 in 5 patients in the REVEAL Registry who were diagnosed with PAH reported symptoms for more than 2 years before their disease was recognized.
  • Women are 4 times more likely than men to be diagnosed with IPAH, and they are just as likely to have a delay in diagnosis.
Sources: Delay in Recognition of Pulmonary Arterial Hypertension: Factors Identified From the REVEAL Registry (PDF), Lynette M. Brown, MD, PhD, FCCP, et al (CHEST, 2011); PHA International White Paper, Pulmonary Arterial Hypertension: Recommendations for Improving Patient Outcomes (2011)

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.