Friday, May 31, 2013

Attention: CuraScript customers

Re: Accredo and Curascript Merger Information
To: Current CuraScript Patients

As many of you are now aware, two major specialty pharmacies for pulmonary hypertension patients, Accredo and CuraScript, merged in 2012. The combination of Accredo and CuraScript together means many things for patients, and this letter serves to address one of them – Specifically for current CuraScript patients and what they can expect from the merger process.

·         Between now and January 2014, it is anticipated that all current CuraScript patients will be migrated (transferred) into the Accredo system. This transition has already begun. Eventually all patients served by the merged company will be serviced under the name “Accredo”.

·         Patients will be migrated by groups according to “payer” – in other words, these groups will be created based on who their insurance provider is.

·         Patients will receive a letter ahead of when their migration is anticipated to occur. PLEASE BE AWARE: Because of HIPPA regulations, the envelope for this letter cannot state that it comes from a specialty pharmacy and the outside may appear somewhat generic. Please check all mail carefully and be on the lookout.

·         Patients will still receive a monthly call to fill medications – but it will be from an Accredo rep, known as a “patient care advocate”.

·         Ideally, patients will not have to do anything differently in order to get their medications. However, there are two things you should be aware of:

o   Some specific payers (insurance companies) may end up requiring a new prior-authorization.

o   Medicare will require that patients have a new prescription on file, even for medications already being dispensed.

Your prescribing doctor and the specialty pharmacy should be taking care of this process. However, PHA strongly recommends that patients remain vigilant self-advocates. If you have any concerns at all, do not hesitate to contact your medical provider, the specialty pharmacy, or your insurance company if necessary, to check on the status of your prescription or order.

PHA is partnering with UCSF for the Neonatal & Childhood Pulmonary Vascular Disease Conference!

PHA is partnering with UCSF for the Neonatal & Childhood Pulmonary Vascular Disease Conference! The conference will consist of medically led sessions, as well as a special Family Session on June 22nd to discuss issues pertinent to families living with PH. This special family-centered session will offer families the opportunity to interact with other families in a smaller group setting. It will consist of three “journeys” presentations from parents, an open discussion time for all to share, and a panel discussion with participation from Steve Van Wormer, PHA Board member and caregiver.

Event details
Neonatal & Childhood Pulmonary Vascular Disease Conference: Family Session
When: June 21-22, 2013
Hilton San Francisco Financial District
750 Kearny Street
San Francisco, CA 94108
Register Now

Thursday, May 30, 2013

The third annual Power for PH — PHun Walk for a Cure to be held June 2

A fundraising event for PH is slated for June 2 at Roosevelt Park in Edison, NJ. The third annual Power for PH — PHun Walk for a Cure will be held from 10:30 a.m. to 1:30 p.m. in honor of Olivia Marie, a 5-year-old girl who has battled PH since she was 4 months old.

The inaugural walk was organized two years ago by Olivia’s parents, Christina and Manny Rodrigues of Metuchen, with the support of their family and friends as a way to raise funds for research to find a cure for the disease and to raise awareness to help build a network of others who are coping with this disease.

Registration for the 3-mile Power for PH — PHun Walk for a Cure is $20 for adults (children under age 12 are free) and includes breakfast, lunch, DJ music, children’s activities, a PH bracelet and 10 raffle tickets. Dogs are welcome in the park.  Roosevelt Park is located at 1 Pine Drive (west of Menlo Park Mall). To register, for more information about this years walk  or make a donation, visit ph-2013 or call 973-202-1382.

Receive Monthly Telephone Support Group Information

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Role of Endothelial Apelin-FGF Link Mediated by miR-424 and miR-503 in Pulmonary Arterial Hypertension

Hyung Chun, MD

June 11, 2013 at 1 p.m. ET/11 a.m. PT

In pulmonary arterial hypertension (PAH) there is a dysregulation of microRNA-based endothelial signaling mechanism.  In this research update, Dr. Hyung Chun, a researcher from Yale University, will discuss his group's recent research into the role of some of the novel mechanisms that cause disease in PAH as well as the possibilities they may hold for future therapeutic targets.

Join us June 11th to learn more!

Find Caregiver-to-Caregiver Support

PHA Caregiver Email Group
An email group for family members and caregivers of PH patients. This group is your chance to ask questions, share information and vent with people going through something similar. We know that pulmonary hypertension can be life-changing for the entire family.  (Requires a free Google account.)

PHA Caregiver Mentors
PHA's Mentor Program includes a team of caregivers who are ready and eager to answer your questions by email. They can't provide medical advice, but they can share their experiences caring for loved ones with PH and help you find resources to ensure your loved one receives the best care possible.

Local Support Groups

PHA Support Groups offer knowledge, support, hope and empowerment. There are more than 230 support groups and at least one new group is added each month. You are not alone and there's a good chance there's a group meeting near you.

Wednesday, May 29, 2013

Singing Opera with Someone Elses Lungs

Charity Sunshine Tilleman-Dick, a 28-year-old American soprano, has performed at the Kennedy Center, Lincoln Center, and around the world. To the right is a photo of her performing at the 9:30 Club in Washington, D.C., at PHA's Rockin' for the Cure event in 2006. A rare disease, idiopathic pulmonary hypertension, demanded she have two double-lung transplants. Despite all odds she continues to sing. She shared her story in The Washington Post. Read article

Charity's grandfather was Congressman Tom Lantos, who was a great champion for the pulmonary hypertension community in Congress. Get involved in advocacy for PH research

Bluegrass Festival for Pulmonary Hypertension in Colorado

Summer concert season is here! Join us for a 3-Day Bluegrass Festival at the Colorado State Fairgrounds in Pueblo May 31 - June 2. There will be a great lineup of 17 bluegrass bands! Proceeds will benefit the Robyn Barst Pediatric PH Research & Mentoring Fund. Hope to see you there.

See PHA’s online calendar of events for more details | Read article in Pueblo Chieftan

Warm Weather and PH

It’s important to pay close attention to your body’s reaction to warm weather, especially while enjoying the outdoors. Prolonged exposure to heat and sun can quickly cause worsening symptoms of PH. Getting too hot can cause things such as heat exhaustion, heatstroke and dehydration.

Here are a few tips to help keep cool in the summer months:
  •     Stay hydrated in the heat, but be cautious. Remain within any fluid restrictions ordered by your PH specialist unless instructed to do otherwise. Avoid caffeine and alcohol, including non-herbal tea.
  •     Wear light, loose-fitting clothing. A wide-brimmed hat allows you to take the shade with you.
  •     Stay in an air-conditioned environment. A fan can be substituted, but heat-related illness cannot be avoided by using only a fan when the temperature is over 90 degrees. If you don’t have air conditioning at home, consider visiting a temperature-controlled public place such as a mall or library.
  •     Don’t over-extend yourself. Try to avoid physical work during the hottest part of the day. You can rest and stay cool by lying down with a cold towel over your face, or by taking a cool bath or shower.
  •     Wear sunblock. This is very important if you’re expecting to spend any significant amount of time outdoors, even in a car. Use broad-spectrum, water-resistant sunblock of a minimum SPF 15. Apply liberally and re-apply every two hours after swimming or sweating.

Tuesday, May 28, 2013

Chicagoland… Come Rock Out to Sting

We have tickets to the sold out Sting concert on June 8 in the Chicagoland area! Join PHA Midwest for a night at the O2 breath “Under the Stars Lounge.” Avoid the rush of getting to the park early to find the perfect lawn spot, schlepping the essentials and picnic treats and all the other paraphernalia that make concert going magic. We will supply it all for you, with a premium, roomy lawn space for you and your PHriends to enjoy a catered affair to the music of Sting.

Learn more and get your tickets today!

Helping Your 2- to 5-Year-Old Cope During a Medical Crisis

A medical crisis can be a frightening experience for both you and your child who has PH. During an emergency, being able to communicate with your child about symptoms and help them stay calm are especially important. Handling an emergency begins long before the emergency happens: advance preparation can make all the difference. Read on for advice on communicating about symptoms and helping your child — and their siblings — cope during and after a crisis.

Helping Your Child Keep Calm During a Medical Crisis

Breathe In, Breath Out. Focusing on a breathing exercise helps children in two ways: it distracts them from the crisis, and deep breathing helps the body de-stress. Practice breathing exercises regularly so that your child is comfortable using them, and then guide them through the exercises during a crisis.
Use Imagination. Children have wonderful imaginations, which can be great for practicing guided imagery relaxation exercises. Take some time each week to practice imagining yourselves somewhere calming, like the beach. Ask your child questions to help them focus on what they are imagining — “What are you wearing? Who else is at the beach?” Then during a crisis, help your child go to their “happy place.”
Comfort Objects. Most children have a comfort object — a blanket, toy or doll — they want with them during unsettling moments. Make sure you bring along your child’s comfort object during a crisis.
If You’re Not There. If your child is on medication, you’ve probably trained your childcare providers in administering the treatment and being on the lookout for any side effects. Similarly, you want any adult caring for your child to know how to help your child stay calm if a crisis occurs. Along with your other instructions, show them any breathing exercises, relaxation techniques or coping tools you practice
with your child.
Don’t Lie. You want to build your child’s feeling of safety and trust in you and their medical professionals. Don’t make promises, and don’t tell your child, “It won’t hurt.” Broken promises will be more damaging in the long run.
Stay by Their Side — and Let Them Know It. An unplanned visit to the hospital can be frightening, and your child will take reassurance from your presence. Make sure they know that you’re aware of how they are feeling and that you’re going to stay by their side. For instance, you might say, “I know you’re having a hard time breathing right now. The doctor is going to help, and I’m going to stay with you.” If you’re required to leave the room for a procedure, explain to your child where you’re going, why, and when you’ll be back.
Read more and find further resources ... 

Summer Travel with PH

For many PH patients, travel is an important part of their professional and personal lives. Being diagnosed with PH is no reason to think that your traveling days are over! Though additional planning is required, there are a wide variety of resources available today to help you through the extra steps of traveling with PH.
Before deciding to plan a trip, you’ll want to consider the effects of altitude and weather on your body. Read our Climate and PH section to learn what to keep in mind.
Planning well ahead of travel ensures that your trip is as safe and enjoyable as possible. Review your travel plans with your doctor as early as you can. Be sure to discuss the need for supplemental oxygen, the amount of medications and medical supplies you should pack and the altitude during travel and at your travel destination.
Pulmonary Hypertension: A Patient’s Survival Guide is a great resource for additional travel tips and anecdotes from PH patients.

Monday, May 27, 2013


Being a teenager is all about becoming more independent, meeting new people, figuring out how to fit in with your friends, thinking about who you are, and making plans for the future. These years can be rough for anyone, but for teens with pulmonary hypertension they can sometimes feel especially unfair and stressful. You may be trying your very best to do it all: hang out with friends, keep up with homework, and come up with answers to big questions like: “What do I want to do with my life?” And then, on top of everything else, you’re expected to deal with PH. Between all the medications, missed school, and doctors’ appointments, it can feel like a lot.
Learn how other teens with PH are coping with life, family, friends, high school and more.

Memorial Day

Our thoughts are with the PH community for Memorial Day 2013 -

Saturday, May 25, 2013

Pulmonary Hypertension in U.S. Veterans Underdiagnosed

A study in the Journal of the American College of Cardiology (JACC) reported that severe pulmonary hypertension is under recognized and associated with substantial mortality in U.S. veteran patients. Veterans show elevated rates of cardiopulmonary diseases that promote PH. The study recommends enhanced awareness among clinical cardiologists about PH diagnostic testing.

Young Adults: Connect with Generation Hope

The mission of Generation Hope, PHA's group for patients in their late teens, 20s and 30s, is to connect young adults with PH and provide a safe and positive place to find support, inspiration and information. This is accomplished through, blogging, email groups and social networking and through the collective support of patient-led advocacy, awareness and fundraising initiatives.

"Young adults have the potential to give hope to a generation that read about poor statistics and outcomes from a previous generation... it is my hope to have our generation see the cure for PH." - Lindsay

Friday, May 24, 2013

Balancing Act: Parents Weigh in on Sibling Issues

It can be hard to balance the needs of all your kids — especially when one of your children requires intensive medical care. We asked parents to share their tips for helping children cope with a sibling’s PH diagnosis.

Having Time for Everyone
  • Support network. Everyone can play a role in helping kids cope with PH in the family. When Britt’s 4-year-old daughter was diagnosed with PH, Britt and her husband were concerned about helping their 8-year-old cope. “We notified Gracie’s Brownie troop, teachers, our friends, neighbors, and family and asked that they give any time they could to Grace,” Britt shared. “Read, take her places, play dates, movies, sit and talk — anything that would make her feel loved, especially during the times Mommy and Daddy couldn’t be around.”
  • Celebrate accomplishments. If you can’t be there in person, find ways to let children know you’re thinking of them and celebrating with them. “I missed Sydney’s last day of elementary school because Brooke was having heart surgery hours away,” Billie told us. “I had a limo pick up Sydney and her friends from school and take them out for pizza and ice cream.”
  • Turn medical trips into vacation opportunities. “Since we no longer can afford to travel very far for family vacations, I usually ask if either of the kids wants to go on the medical trips to New York,” said Billie, who has two kids in addition to her daughter with PH. “All three kids have been able to take turns bringing a friend to New York. There is usually plenty of time for some fun before and after the tests.”
  •

Associated Disease Patients: Coordinate Your Care

Many PH patients are diagnosed with PH in association with one or more related conditions. Learn more about coordinating specialists and concurrent treatment plans, education non-PH specialists about PH treatment and gathering medical information about how PH interacts with other diseases at PHPlus.

Thursday, May 23, 2013

Research on Two New Pulmonary Hypertension Drugs Presented at ATS

The American Thoracic Society recently held their annual conference and evidence from studies on two new pulmonary hypertension drugs in the pipeline were presented.

Riociguat increased walk distance by pulmonary arterial hypertension patients. Read article

Macitentan improves health-related quality of life in pulmonary arterial hypertension (PAH) and reduces PAH-related hospitalizations. Read article 

Learn more about current pulmonary hypertension treatments

There's Still Time to Donate in the Spring Appeal

There’s still time to make your 2013 annual fund contribution to support PHA’s mission to provide hope through support, education, research, advocacy and awareness. With your help, we will continue to make progress in the fight against PH.

The Treatment of Pulmonary Arterial Hypertension with the Anti-proliferative Agent Hydroxyurea

Ronan Desmond, MD
June 5, 2013 at 3 p.m. ET/12 p.m. PT  

Pulmonary Arterial Hypertension have been shown to have similar characteristics with myeloproliferative disorders that are normally treated with hydroxyurea.  Hydoxyurea works in these patients to decrease CD34+ hematopoietic progenitors and decrease cell counts. NHLBI researcher Ronan Desmond, MD will discuss his group's hypothesis that hydroxyurea will improve hemodynamic parameters in this difficult to treat group of patients. The group's study will be looking at the effects in NOC/SCID mice in which the disease phenotype has been replicated.