Tuesday, December 9, 2014

Awareness Month…planes and trains and other things

Zebra in the Fresno crowd
PH Awareness Month...  

It’s a footrace – an important footrace – with a lot of zig zag.  To explain, I’m using this blog to fill out what I wrote in earlier blogs and talk a bit about what I saw and did as I traveled for PHA just before and during this important time for building PH Awareness.

Personally, Awareness Month is also a time to feel the pulse of our community and better understand the effectiveness of current programs and future directions.

When I first came to PHA in 1999, there was little time or financial ability to travel but I was struck by the Awareness Week (that’s what it was then) pioneers who were tabling at several hospitals around the country.  They were the backbone upon which we built the great Awareness Month activity we are seeing today. 

As always, my November Awareness Month travels began in late October.  On the 23rd of the month I made my first stop in Denver to attend the induction of Dr. David Badesch into the Colorado Pulmonary Hall of Fame.  Dr. Badesch is one of the great clinicians and researchers in the field and a friend who helped build medical side of PHA’s work.  It was wonderful to see him receive this great honor.

After less than 24 hours in Denver I went on to Fresno, California.  Many months earlier, I had promised Dr. Vijay Balasubramanian, Director of the PH program at UCSF Fresno, and Perry Mamagonian, the very active Fresno support group leader that I would be there.  The night before the event, On October 24th, I had dinner with Dr. Bala as he is called and several administrators and staff at his hospital.  He said to me, “You know, we have worked hard to build a strong PH program here in Fresno.  When I looked at PHA’s PH Care Centers accreditation guidelines, I saw that we had everything needed…except a nurse coordinator.  I went to my hospital administrators and told them that I believed the accreditation program is important and asked their help.”  What he said next was striking in realizing how the new PHCC program is already improving quality of care for patients.  “My administrators supported me. Meet my new nurse coordinator.  She started last week.”  He went on to describe how his nurse coordinator was already tapping into connections with other nurse coordinators from PHA’s PH Professional Network (PHPN) for mentoring.  Knowing all the work that has gone into building the PHCC accreditation program, it was striking to see how it is already beginning to impact practice for the good of patients.

 On Saturday October 25th, I attended the Fresno Annual Fun Walk.  I was impressed at how many people came and reminded how important it was to have a PHA presence at such events.  I truly wish we had the opportunity to attend all these great events…but with an annual calendar that includes 90 special events, 60 PHA medical education meetings, 15 Building Medical Education in PH meetings, 4 regional patients conferences and quite a bit more, that has become sadly impossible. We have grown to have one PHA meeting almost every two days.  All are important in our quest to change the history of this disease…whether or not we are staffed to attend.

Later in October 25th, I flew to Austin, Texas for the annual conference of the American College of CHEST Physicians.  PHA attends conferences like this where we exhibit and connect with medical professionals, develop alliances and host our own committee meetings.  CHEST is always a good opportunity for all these things. In the Austin airport I saw the banner to the right.

After several days back at the office, I attended the Baltimore Zoo Walk on Sunday, November 2. Later in the day, I traveled to San Francisco for two days of meetings with our corporate partners at Actelion and Gilead.  It is an opportunity to let them know how we have used their financial support during the past year and where the organization is heading in the next.  At Actelion, I had the opportunity to speak to their staff at their Awareness Month Kickoff Luncheon.

On to New York City on Nov. 6 for two events.  First, a visit to NASDAQ where our PSA's played on the NASDAQ stock exchange screen (the largest screen in the world!). Then on to our New York Chapter Gala.  It was a terrific event honoring Dr. Evelyn Horn as a pioneer in PH and her patient, singer Chloe Temtchine and Shad Azimi.  Jeffrey Hayzlett, host of Bloomberg TV’s C Suite was a great MC.

After the New York Gala, I headed to Syracuse for the Sarah Smiles event, held at the Camillus, NY Fire Department.  It’s an event I had been hoping to get to for several years.  I had met Sarah Peek and her parents Michelle and David and little brother Nathan in 2009 at the Long Island Support Group Fun Walk.  Sarah was a lovely 6 year old whose spirit
really struck me…and whose loss in 2010 was deeply saddening.  It was great to see Michelle and David again at this annual fund and friend-raising tribute to Sarah – and to meet Sarah’s grandma, Bonnie Corey, who I’d previously spoken to by phone.

From Syracuse I headed back to the office for four days of 2015 budget sessions.  Twenty-two budget presentation meetings were held on Monday, Tuesday, Wednesday and Friday during the week of November 10.  Thursday was reserved for PHA’s Annual Congressional Luncheon.  This was a well-attended event which included encouragement from Sen. Bob Casey of Pennsylvania and NHLBI Director Dr. Gary Gibbons and Congressional office visits by the many patients, family members and medical professionals who attended.  Before the event, many of PHA’s members called their Members of Congress requesting that they or someone from their office attend the luncheon and saying that they would call back to hear how it went.  As always, our community’s efforts at the local level really helped build Congressional interest and attendance and our clout at the national level.
Shortly after the last budget meeting at 4pm on Friday November 14, I headed back to the airport for a late flight.  This time it was a little different.  I got to spend the weekend with my daughter and son-in-law in Germany before continuing on to Paris to meet with leaders of European PH Associations (including France, Germany, Italy, Hungary, Norway and the United Kingdom).  As the number of PH associations continues to expand globally, meetings like this help to us all to collaborate better and find ways to build programs of value to our communities.  While I was in Europe, PHA launched the first CTEPH Awareness Day as part of PH Awareness Month with great participation.  It was exciting to see that our European partners were already aware of and excited about tis new effort.

Following the European meetings, I flew to Chicago for PHA’s Midwest Chapter Hearts Phor Hope Gala on November 22.  I particularly wanted to be there to acknowledge Dr. Stuart Rich who was receiving an award for his career-long and ground-breaking work as one of the founders of the field of pulmonary hypertension.

The next morning, I flew home for more budget work and a very quiet and restful Thanksgiving!
There is so much that I saw during Awareness Month 2014…and much more that I could not see. 

PHA is based on the principle that a strong community can change our world for the better. 
Awareness Month is one important and vibrant proof of that principle.


Wednesday, November 26, 2014

A Year to be Thankful PHor

Throughout the year, these blogs are an opportunity to tell you about what PHA is doing with and for you.  As we approach the end of the year, this blog is a little different…

With Thanksgiving a couple of days away and the Winter holidays fast approaching soon after, I’ve spent some time recently reflecting on this year and all that we in the PH community continue to achieve. From celebrating our most successful International PH Conference and Scientific Sessions to date, to launching PHA’s accreditation program for PH Centers, to rapidly increasing PH awareness through our new PHAware program, to the continuing growth of our 245 support group network, to shining a new spotlight on Chronic Thromboembolic PH (CTEPH), and new PH research programs and grants, it is amazing to see what we have achieved together in 2014.

More than these successes though, I’m so grateful to be connected to this amazing community. You give so much to those affected by pulmonary hypertension. No matter how you have been touched by this disease, you go above and beyond to sustain our efforts to fight PH and support the PH community. Today I’m asking you to give back in a different way, through a tax-deductible donation to PHA’s end of year appeal that will support our continuing fight against PH.

Another way I’ll be getting into the spirit of the holiday season this year is by participating in #GivingTuesday, a global day dedicating to giving back to the causes that mean the most to you. I invite you to join us by making a donation to PHA’s end of year appeal on Tuesday, December 2 and continuing to spread hope for this community.

Now is a great time to give to PHA, because your donation will be doubled! Thanks to a matching gift from Actelion Pharmaceuticals, the first $25,000 in donations will be matched dollar for dollar. Make a gift today to double your impact.

If you have not already, please take a look at PHA’s 2014 Annual Report to see some of the ways this community put Hope in Motion over the last 12 months and our plans for the next 12. It is your support that makes all of this possible.


As I’ve said before, and I’m sure to say again, this was an extraordinary year for the PH community. Though there is still much to be done, we can be so proud of all that we accomplished this year, together.

Please make a tax deductible gift today, or mark your calendar for #GivingTuesday and support the programs that are sustaining hope and changing lives every day.

With hope for 2015,
Rino

Wednesday, November 12, 2014

Busting Clots and Myths: Why Early Diagnosis Matters

Early and accurate diagnosis is the key to improving patient treatment outcomes and quality of life. To save lives, doctors must be able to recognize symptoms and understand the correct process of diagnosis. PHA’s Early Diagnosis Campaign: Sometimes it’s PH is actively working to break down the barriers to accurate diagnosis through physician and patient education and awareness. By decreasing the time to diagnosis, we save lives. 

The following guest post by Dr. Manreet Kanwar tells the story of Angel, a chronic thromboembolic pulmonary hypertension (CTEPH) patient who went through the complexity of the health system to finally reach her diagnosis months after symptom onset. Her story shows the struggles patients must go through to get answers and proper treatment. In honor of PH Awareness Month and CTEPH Awareness Day on Nov. 18, please read and share Angel’s story for Better Understanding, Screening & Treatment (BUST) of CTEPH. Also, tune into the CTEPH Q&A webinar with CTEPH specialists Dr. Bill Auger, Dr. Gustavo Heresi-Davila and Crystal Weber, RN, on CTEPH Awareness Day (Nov. 18) at 5:00 p.m. ET. Register now for this webinar.


Until she is ready to share this story in her own words, let’s call her Angel…

I recently met Angel and her husband Bill in my clinic, and their story reminded me of why the focus on early diagnosis in CTEPH remains key in offering a potential cure for this deadly disease.

Angel lives in a small town in the Midwest with her husband, Bill, and their teenaged son. When Angel turned 40 a couple years ago, it was only the occasional migraine that could slow her down, but that would soon change.

It started slow. At first when Angel noticed that she had to stop and catch her breath every once in a while going up a flight of steps, she didn’t really think much of it, and gradually, it became a thing of routine. She promised herself that she would join a gym, guessing that she was just out of shape. Surely, she thought, that must be it.

Weeks went by and everyday activities started seeming like chores, until finally she could not ignore her symptoms any longer. After a visit to the family doctor, chest x-rays and a round of antibiotics, she thought she would be good as new. But the breathing just did not get better, and now Angel was starting to get and stay tired all the time. After another trip to the family doctor and some blood tests, there were still no answers to be found. She underwent a breathing test (she had some exposure to second hand smoke at work) and was prescribed a trial of nebulizers. After a few weeks, it was clear that these were not going to do the trick either. Since all her test results looked ok, it was decided that her symptoms were "probably just related to anxiety." Another three months went by, and now Angel was convinced that something was really wrong. After yet more blood tests and reassurances, Angel asked for a second opinion. This time, a CT scan of her lungs was ordered.

Shortly after undergoing the scan, Angel received a call to schedule an urgent follow-up appointment. She was told that her scan was "abnormal" and that she may have a condition called sarcoidosis of the lungs. This could be, she was told, the explanation for her symptoms. Since there are no blood tests to confirm sarcoidosis, Angel was referred to a surgeon for lung biopsy. She spent the next week reading all about sarcoidosis on the Internet.

On the day of her appointment, Angel and Bill arrived at the multi-specialty clinic only to realize that they had accidently made an appointment with another physician who happened to share the same last name as her surgeon! Luckily for them, he was a pulmonary specialist. He reviewed Angel’s CT scan and his words left them stunned. He told Angel that she did not have sarcoidosis but rather another rare condition called pulmonary hypertension. The next step was a series of tests to confirm the diagnosis.

Angel and Bill returned home more confused and concerned than ever and started reading up on PH. As she read the symptoms, she felt that they described her experience; but how could she have acquired this condition? They were determined to find out and made another appointment with yet another specialist.

The weekend before her appointment, Angel found herself feeling more tired than usual. As she got up from finishing a meal, she suddenly felt a wave of dizziness pass over her; and then, Angel passed out. She soon found herself in the ICU undergoing a flurry of new tests. An echocardiogram showed that her pulmonary pressures were more than 100 mmHg (normal is less than 25), and Angel’s pulmonary hypertension was soon confirmed via a right heart catheterization.

Angel was fortunate that the center where she was being treated knew to order a V/Q scan to rule out the presence of CTEPH. In her case, the scan confirmed that she had a number of old blood clots in both lungs. Angel finally had a diagnosis: chronic thromboembolic pulmonary hypertension (CTEPH). Angel was promptly started on blood thinners and IV drugs to lower her pulmonary pressures, and for the first time in a while, she felt “like her lungs could finally get some air.”

A week later, Angel was back on her feet and had been referred to our clinic to be evaluated as a potential candidate for pulmonary thromboendarterectomy (PTE) surgery, a surgical intervention that would potentially offer her a chance for a cure from this otherwise progressive and potentially deadly disease. As part of the evaluation, Angel also underwent several tests to rule out other potential causes for her PH and her blood clots.

Angel is currently scheduled to have PTE surgery this month.

Along the way to her CTEPH diagnosis, there were a lot of “what ifs” for Angel. What if the initial CT scan had been done with contrast? (In order for a CT scan to detect clots, IV contrast has to be used.) What if she had not accidently seen the “wrong” doctor who had her on the right path? What if she had not persisted in her quest to seek out the right answers?

But despite all this, Angel tells me that she is focused on the future, thankful that she finally understands why she felt the way she did and glad that she has a shot at a possible cure.

Last, but not least, Angel has promised that after she’s recovered from her surgery, she will share her journey in her own words, as a follow-up to this blog.

So, stay tuned!

Wednesday, October 29, 2014

Welcome to PH Awareness Month!

Thanks go this week to Katie Kroner, PHA’s Director of Advocacy and Awareness. Katie has been with PHA for nine years and helped organize a great many Awareness Months. In her guest blog, Katie introduces PH Awareness Month 2014 and gives you links to easy things you can do to make a big difference.

By the way, I do intend to get back to writing my blog again as soon as I can find time. The past five days have been a pretty good example of what’s been keeping me busy beyond the normal workload. Thursday was a stop in Denver where Dr. Dave Badesch was inducted into the Colorado Pulmonary Hall of Fame. Dr. Badesch has been a backbone in PHA’s development of a strong medical community. Friday to Fresno, Calif., where I was hosted by Perry Mamagonian and Dr. Vijay Balasubramanian. I was there for the 3rd Annual Fresno Six-Minute Marathon and Fun Walk on Saturday and got to see many old friends and make many new ones. Saturday evening on to Austin, Texas, for the American College of Chest Physicians (CHEST) Conference where I had many side meetings. After an eye-opening 5 a.m. CTEPH session on Monday (and a few following meetings), I flew back to Maryland to get back to my desk on Tuesday morning. Travel will slow after Dec. 15, and I look forward to being more active with my blog again.

Rino


Welcome to PH Awareness Month!
Don’t Miss Two Big Opportunities on Nov. 1

Pulmonary Hypertension Awareness Month kicks off this Saturday, Nov. 1, with two not-to-miss opportunities.
  1. Join Color the World Periwinkle DayOn Nov. 1, wear periwinkle and take a photo. Hand out wallet cards. Share with your online networks. Your imagination is the limit!
  2. RSVP by Nov. 1 for PHA’s Congressional Luncheon and National Advocacy Day. This free event gives you the opportunity to have your voice heard by your Members of Congress and their staff. Even if you can’t attend, get involved by inviting your Members of Congress or their staff to the Luncheon (and following up to see what that person thought and will do).
Lighting the Way to a Better Tomorrow

This year’s Awareness Month theme is Lighting the Way to a Better Tomorrow. Too often, a pulmonary hypertension diagnosis feels like being shoved into a dark corner. Who can see that you are sick? Who understands what you’re going through?

Each time one person tells another about PH, they dispel a little of that darkness. Whether you are sharing your diagnosis story with a reporter, advocating before your Members of Congress, fighting back through fundraising or talking about PH with a neighbor, you are a light for a PH patient. Together, we are Lighting the Way to a Better Tomorrow.

You are Our Hero

If you read this blog regularly, you know that Rino often shares the stories of PH heroes – everyday people who are changing the course of pulmonary hypertension by ending isolation, inspiring others and proving that “hope is a verb.”

What you’ll discover during Awareness Month is that you are one of those heroes. Whether you are sharing your story by pitching it to the media, creating a personal fundraising page or posting a photo of your clot during CTEPH Awareness Day on Nov. 18, you are part of making life better for PH patients everywhere. And that’s something big.

Don’t forget to send us your awareness month stories, photos and videos so that we can share them with the entire PH community.

Wednesday, October 15, 2014

PH Care Centers (PHCC) and the Patient Registry

The PH Care Centers Program and the PHA Patient Registry mark a major milestone in our community's fight against this terrible disease. Over the next 18 months as PHA takes applications and begins to review and accredit sites, we know this process will lead to a trusted quality of care for patients. So far, PHA has received 19 applications from medical institutions and is receiving new applications each week. I have asked Olivia Onyeador, PHA's PHCC Program Manager, to talk about the milestone we met with this program this fall.

At PHA, when we say that “Our mission is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, research, advocacy and awareness,” we mean just that. One “way” that has been carefully planned, heavily researched and recently launched this September 2014 is through the Pulmonary Hypertension Care Centers (PHCC) Program. Colloquially referred to as the PHCC Program, PHA’s Scientific Leadership Council and various PHA medical leadership and staff created this initiative as a way to improve the overall quality of care, and in turn the outcomes, of patients with PH.

The program aims to promote diagnostic and treatment standards. One goal of the program is to provide benefits to patients, families and caregivers by increasing awareness of expert care and access, increasing education and support, and developing more opportunities for participation in clinical research.

Part of the value of the PHCC is the commitment of future accredited Centers to provide the highest standard of care, based on PH consensus guidelines, to patients receiving treatment at each accredited Center. As a part of the PHCC, Centers will eventually participate in a PHCC Patient Registry, a vital part of this program’s commitment to patient-centered research. Data from this registry will help to inform future guidelines and best practices for the care and treatment of PH patients.

Currently, six sites have been accredited through the PHCC Pilot Site Program. The purpose of the Pilot Site Program was to solidify the accreditation criteria and guidelines set forth for PH programs applying for accreditation and to refine the process of reviewing future applicant Centers. The PHCC review and application process is slightly rigorous as the intention is to ensure patients at accredited Centers are receiving expert level care. After a Pilot Site review at the University of Pennsylvania PH Pulmonary Vascular Disease Program, Dr. Steven Kawut commented that the site review “highlighted our educational efforts at various levels and made us re-evaluate quality improvement initiatives and ways to improve the patient experience.” As the PHCC Program grows, it is of utmost importance to continue to stress the necessity of quality improvement in the field of PH in an effort to decrease the misdiagnosis and mismanagement of PH patients.

Although I have been with PHA for less than a year, I realize that I am only a small piece of a large, ongoing movement in the PH community. This movement includes everyone touched by PH and is growing each day. As we look to the future, and the ability to glean valuable data from the PHCC Patient Registry, we look to build upon current standards and guidelines to aid in the fight against PH.

The PHCC application was launched on Monday, Sept. 29. It is now open to the public for submission and available for download.

Wednesday, October 1, 2014

Together We Can "Color the World Periwinkle"

As we prepare for Awareness Month this November, Diane Greenhalgh, PHA's Director of Web Services has written this week's guest blog. She makes the important point that PHA's Internet connections, while an important social benefit, are also a tool for increasing awareness and fighting back against PH. Awareness Month is coming and you are essential to its success.

When I started at PHA in 2006, Rino talked a lot about how important our online communities are for ending the isolation that patients and families feel. With social media and other online community tools, the PH community across the world is coming together and forming lasting PHriendships online even though they have never met in person. My roommate and best friend Alex, who is a PH patient, has only ever met some of her closest friends in person at PHA's biennial conferences.

Now that we have this global network, let's take it out for a spin and see what it can do! In exactly one month from today we are asking the entire PH community to unite with your PHriends from across the globe as one voice to kick off PH Awareness Month with Color the World Periwinkle Day on Nov. 1.

This starts with the very simple act of wearing periwinkle, or purple, on Nov. 1 along with your PH gear. Advertise about Color the World Periwinkle Day beforehand to everyone you know so they do the same.

From there you can do a number of things to color your world periwinkle. You can create a personal story page so people can understand what it is like to live with PH and have a way to support you, organize a small PH-themed event like a happy hour or party, and spread awareness to your online networks.

Regardless of how you decide to celebrate Color the World Periwinkle Day we have the tools you need to guide you through the process and staff to support you, whatever idea you come up with.

Check out our Color the World Periwinkle Day resources, and don't forget to check out the other ways you can raise awareness throughout PH Awareness Month and beyond.

As individuals we can make a difference. Together we can change the future of this disease. PHers unite!

Wednesday, September 17, 2014

PHAware: Taking Us from Rare to Everywhere

This week, I asked Renee Hockaday, PHA’s Director of Communications, to guest blog on an amazing and growing media awareness program at PHA that holds the promise of helping to make our fellow citizens truly learn and know about pulmonary hypertension… and help us build a better future.

When you meet PHA Board member Steve Van Wormer, you are struck by his boundless energy. But if you look a little deeper, you’ll see his profound commitment to raising global awareness and finding a cure for pulmonary hypertension.

It started with PHA’s public service announcements (PSAs), which Steve put together on a shoe string budget and a Tom Lantos Innovation in Community Service Award. Through our PSA Media Blitz, those PSAs have now been delivered to more than 11,500 TV and radio stations across the country. Each day, new stations and networks are saying “yes” to airing our PSAs while celebrities are sharing our stories.



“I wanted to do something so that more people know about this disease,” says Steve. “The PSAs have taken off and now we can do even more.”



Steve’s vision and determination have thrust our PSA program onto the national stage by creating relationships with Fox Networks Group, Fox Hispanic Networks, CBS, Radio Disney, Hulu, Univision, Telemundo, ESPN, Warner Bros. Records, and Universal Sports Network as well as engaging celebrity supporters – Michael Buble, Laura Dern, Florence Henderson, Courteney Cox and others. This is broadening our audience at an exponential rate, quickly moving the conversation from “What is PH?” to “I’ve heard of that disease… I saw it during the game last night!”



But it doesn’t end there. Marie Mascia-Rand, Director of Community Engagement for PHA's Greater New York and Philadelphia Chapter, has leveraged her connections and relationships in the New York City area to create some amazing exposure for PHA. Because of her efforts, PHA’s PSAs have aired on the TVs in New York City taxicabs – yielding nearly one million impressions during a recent two-week run. And in November, you’ll see our newly branded PHAware PSA Campaign appear in Philadelphia taxicabs, on the largest video screen in the world – the NASDAQ building in Times Square, and in a new print campaign on New York City taxicab toppers. Her passion for this project comes from her own experience as a caregiver, having lost her daughter Chloe to the disease.

So what is PHAware?

PHAware’s goal is to elevate and leverage PHA’s mission and messaging to the general public, news media and potential donors who are becoming aware of PHA through our ongoing PSA Media Blitz.

PHA’s grassroots media campaign (formerly the PHAware Campaign) is now called the Media Action Network. The name change is part of this exciting new opportunity to launch PHAware.org as a resource for those who hear about PH through PHA’s public service announcements, cab toppers and other public awareness efforts.

To celebrate this new PHAware, we are developing a new website and a social media portal to quickly connect to all our outward facing media messaging. PHAware.org will officially launch Oct. 15 – just in time for Awareness Month! In the meantime, you can go to the website to get a sneak peek of what’s to come, and be sure to:

  • “Like” us on Facebook
  • Follow us on Twitter and Instagram @PHAware
  • Use the #PHAware hashtag and post inspirational stories on your own social media sites
  • Share this information and invite everyone to help heighten PH awareness

And this is only the beginning. We see our PHAware messaging reaching pharmacies, supermarket checkouts, gas station TVs, ATMs, hospital and pediatrician TVs, sport arena jumbotrons, billboards and beyond. This exposure will allow us to tell patient stories in ways never before imagined. This opportunity will be the catalyst to create a greater impact on the discourse of healthcare and disease prevention in this country.



As the momentum continues to build, we encourage you to be a part of the campaign. 
Make calls to TV and radio stations and encourage them to play our PSAs.

Visit www.PHAssociation.org/PSAs for call scripts, a how-to webinar and step-by-step instructions.

Contact ProjectPSA@PHAssociation.org for a list of stations in your area.

Go to PHAware.org to see how we are telling the PH story.

Like us on Facebook

Read about us on Twitter and Instagram. @PHAware

And look for us in Times Square in November!

Rare to everywhere indeed.