Sometimes it's PH: An Early Diagnosis Campaign

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. These delays occur because doctors often equate common symptoms with common ailments like asthma or COPD. They’re taught, “when you hear hoof beats, think horses, not zebras.”

PHA’s new Sometimes it’s PH campaign strives for earlier diagnosis and treatment, urging physicians to spot the “medical zebra” - pulmonary hypertension. During Awareness Month this November, PHers are spreading the word that Sometimes it’s PH, one community at a time. PHA invites your support and understanding of the Sometimes it’s PH campaign and other new Awareness Month initiatives.

• Background
• The Plan
• Activity to Date
• The Cost
• Sponsor Level & Benefits

Check out the 2012 Awareness Month page for more sponsorship opportunities.

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 nine, 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 nine treatments, that is a tragedy. This is the basis and the background for the initiation of Sometimes it’s PH: An Early Diagnosis Campaign.

The Plan

The Sometimes it’s PH campaign is planned for a five year duration, and the goals are clear.

Goal 1:	Establish programs to identify PAH early in “high risk” populations
Goal 2:	Reduce median time to diagnosis to six months
Goal 3:	Decrease delay in diagnosis to less than a year for most patients
Goal 4:	Define and increase awareness of PH among medical professionals and the public

A medical and awareness 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.

Activity to Date

Following new research, the Sometimes it’s PH campaign took shape from discussions that began in late 2011 among PHA’s Board of Trustees and Scientific Leadership Council (SLC). The campaign launched at PHA’s 10th International PH Conference and Scientific Sessions with the zebra symbol displayed and explained prominently throughout the event. A PSA has been created and is beginning distribution. A campaign microsite has been launched (http://www.phassociation.org/SometimesItsPH) and is receiving strong interest from the PH community.

After the Conference launch, several special event leaders have already begun to incorporate the campaign into their own events. Campaña de Concientización: “A veces es Hipertensión Pulmonar” (Awareness Campaign: Sometimes it’s Pulmonary Hypertension) is a Facebook page that generated strong interest in the Latin American community for a September 1 virtual event, and PHA adapted this for use among English speaking and other PH groups.

While many of the next steps will flow through the committees described previously, a first step has been taken with the Summer 2012 issue of Advances in Pulmonary Hypertension dedicated to the topic of early diagnosis of PH. In it, the guest editor Dr. Greg Elliott calls for medical support for the Sometimes it’s PH campaign, a call perhaps best driven home in the axiom quoted by Dr. Matthew Hegewald, “diagnosis drives treatment.”

The Cost

PHA has created strong internal knowledge, enthusiasm and cohesion among patients, caregivers and medical professionals living and working with this disease. The goals that have been set are ambitious compared to the budget PHA is seeking to raise for each of the next five years: $500,000 per year.

PHA has already created excitement within its community and drawn leadership interest and activity. That is progress, but it is just the beginning for what needs to be accomplished.

Broadly presented, Year 1 costs will include campaign development costs, including use of consultants, and speaker travel for presentations.

Public Relations support	$350,000
Committee meetings (4) and management	$75,000
Exhibit and Travel	$75,000
Total	$500,000

Public Relations support will fund the following elements of the Sometimes it’s PH PR campaign:

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 Sometimes it’s PH 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, or PH treatment centers. To become an endorser, an organization would need to agree to:

• Allow its name and logo to appear in the campaign materials on a list of endorsers
• Share PHA’s early diagnosis information with its members
• Collaborate with PHA on campaign-related public relations or educational initiatives.

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 the zebra image and campaign messages in special events and advocacy and awareness activities.
• Support and share creative ideas developed by PH patients and families backing the campaign.
• Provide materials such as campaign postcards, zebra striped buttons, PHA’s 1-minute campaign video spot and copies of PHA’s white paper on early diagnosis to help patients and families communicate about the campaign.

Sponsor Levels & Benefits

PHA is pleased to recognize sponsors at the following levels for the Sometimes it’s PH campaign:

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

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

View sponsorship benefits

Check it out! www.SometimesItsPH.org

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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.

 

PHA thanks the sponsors of 2012 PH Awareness Month! Platinum Sponsor:   Bronze Sponsor:   General Sponsor:    To support 2012 PH Awareness Month, please visit the sponsorship page.