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. PHA invites your support and understanding of the Sometimes it’s PH campaign.
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 Sometimes it’s PH: An Early Diagnosis Campaign.
The Sometimes it’s PH campaign is planned for a five year duration, and the goals are clear.
||Establish programs to identify PAH early in “high risk” populations
||Reduce median time to diagnosis to six months
||Decrease delay in diagnosis to less than a year for most patients
||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
Sometimes it’s PH strives to change behavior in medical practice. PHA has formed a broad-scale strategic plan based on strategies to educate and communicate with diverse medical professionals. In the first year of this 5-year campaign, we have introduced the campaign concept and zebra brand to the PH community of professionals and patients, assessed the thoughts of healthcare leaders and practitioners, and begun researching and networking with key associations of health care providers to help us in reaching their members in the field.
Year 1 placed a special emphasis on primary care providers, typically the first to see a patient presenting with symptoms of PH. Our work included using a focus group to assess current knowledge of PH and openness to the early diagnosis message among diverse kinds of primary care professionals. Based on what we learned, we are developing approaches such as free continuing education resources, educational panels at medical meetings, advertisements in online medical media and publishing articles in a range of medical journals. One of our most successful article placements was a cover piece on diagnosing PH in ACP Internist magazine, the monthly magazine distributed to the 137,00 primary care physician members of the American College of Physicians.
We have received endorsements from dozens of organizations including a range of rare disease associations and the international PH community. We continue educating and building our following for the campaign through our website, www.SometimesItsPH.org, our PHA social media platforms, media relations with general and medical news outlets, and a column in each issue of PHA’s journal Advances in Pulmonary Hypertension. The early diagnosis message has also become part of activities in our patient and caregiver community including fundraising events, political advocacy and media outreach.
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
|Committee meetings (4) and management
|Exhibit and Travel
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.
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:
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.