The health of the members of the pulmonary hypertension (PH) community is always the Pulmonary Hypertension Association’s (PHA’s) top concern. Read on to discover how to maintain your health, tips for daily living during the pandemic, COVID-19 updates and ways to connect with PHA.
FAQ on Vaccines for the PH Community
(December 16, 2020) On Dec. 11 the U.S. Food and Drug Administration (FDA) gave emergency approval for the first vaccine to prevent COVID-19 in people at least 16 years old. The vaccine, manufactured by Pfizer-BioNTech, is available under an Emergency Use Authorization (EUA). On Dec. 18 the FDA approved an EUA for the ModernaTX Inc. vaccine for individuals within the U.S. ages 18 years and older. Discuss with your PH healthcare team about all your medical conditions and whether the Pfizer or Moderna vaccine are right for you.
Multiple COVID-19 vaccines are advancing through clinical trials, but none has received full FDA approval. Distribution of Pfizer-BioNTech vaccine began Dec. 13 throughout the United States. The Pfizer-BioNTech vaccine requires two doses administered three weeks apart. Distribution of the Moderna vaccine began Dec. 20. The Moderna vaccine requires a second dose four weeks after the first dose. Details about implementing vaccination will be determined at the state and local level.
Throughout the vaccine approval and distribution process, the Pulmonary Hypertension Association (PHA) will address related questions and concerns from the pulmonary hypertension (PH) community. We will update this information as scientific and medical knowledge about COVID-19 and vaccines emerges. In the meantime, we urge everyone to:
Stay safe by wearing a mask, washing hands and maintaining physical distance from others.
Talk to your PH health care provider about the COVID-19 vaccine and when you might be able to get vaccinated.
Q: When will I as a PH patient be able to get a COVID-19 vaccine?
A: That depends on where you live and how many vaccines ultimately are approved. Multiple vaccines are in clinical development. However, demand initially is expected to exceed supply even if more than one COVID-19 vaccine receives Emergency Use Authorization from the FDA. Due to the limited amount of vaccine doses, vaccination will be prioritized for specific groups of people and occur in stages. The CDC has prioritized health care providers and residents and employees of long-term care facilities. As those priority groups receive vaccinations, CDC will release additional information about vaccine distribution and allocation, including timetables for people with preexisting conditions like PH.
Struggling with your copays and other medical costs due to the COVID-19 pandemic? Discover copay assistance resources for people with pulmonary hypertension. Find available grants on the Pulmonary Hypertension Association website. Learn more.
The Pulmonary Hypertension Association recently hosted a Facebook Live Q&A, “A Conversation on Mental Health,” with licensed professional counselor Venita Welcome. Venita discussed the mental health challenges of living with PH and provided tips to manage those challenges during the COVID-19 pandemic. Watch the video.
After a bout of depression, Rosemary Graham joined the Lupus Foundation of America Georgia Chapter Support Group. Since then, she was diagnosed with pulmonary hypertension and later battled cancer. Today, Rosemary, of Atlanta, advocates for people with rare and chronic diseases. “I’m still on oxygen and have fluctuating symptoms, but I’m alive,” she says. “I am a PH warrior!” See Rosemary’s story in this week’s Right Heart Blog.
The Pulmonary Hypertension Association hosted an August 21 virtual town hall on “Exercise and Pulmonary Rehab in PH” with pulmonologists Jim White and Daniel Lachant. They discussed the potential benefits of an exercise, cardiac or pulmonary rehab program and what PH patients should ask before they begin exercising. Watch the video.
Medicare coverage for telehealth services will continue at least through mid-October because of the continued public health emergency. It also will cover more types of health care services offered via telehealth, and lift restrictions on the number of covered telehealth appointments. Learn more.
Looking for resources to help you manage anxiety? Kristen Holm, Ph.D., M.P.H, discusses how lung disease can affect the emotional well-being of you and your family in two Pulmonary Hypertension Association (PHA) videos. “Living Well With Lung Disease Part One” addresses coping skills and social support to maintain emotional well-being. “Living Well With Lung Disease Part Two” offers tips to understand and identify anxiety and depression, as well as recognize contributors to psychological distress. The videos are part of the online learning platform PHA Classroom. Watch the videos.
University of Washington researchers found a significant move toward telemedicine visits and diagnostic testing disruptions in the early days of the pandemic among PHA-accredited Pulmonary Hypertension Care Centers (PHCC). Josh Lee, M.D., and Peter Leary, M.D., discuss their findings in the July 29 edition of the Annals of the American Thoracic Society. Learn more.
La Asociación de Hipertensión Pulmonar organizó, para el el 26 de junio, una videoconferencia sobre “Elabore su plan de emergencia por HP” con el cardiólogo Esteban Escolar. El Dr. Escolar analizó en qué consiste una “emergencia por HP”, cuándo buscar atención médica de emergencia y cómo preparar los medicamentos, suministros e información importante para una emergencia. Ver el vídeo.
The Pulmonary Hypertension Association hosted a June 29 virtual town hall on “Make Your PH Emergency Plan” with pulmonologist Sandeep Sahay. Dr. Sahay discussed what constitutes a “PH emergency,” when to seek emergency medical attention and how to prepare your medications, supplies and important information for an emergency.
The Pulmonary Hypertension Association hosted a June 12 virtual town hall on “Managing Stress and Anxiety” with psychiatrist Genie Priddy, social worker Marty Rice and licensed professional counselor Venita Welcome, as well as longtime PH patients and PHA support group leaders Joanne Sperando and Doug Taylor. Drawing on their professional and personal experiences, they discussed the mental health challenges of living with PH, particularly during the COVID-19 public health emergency, and provided strategies to help you and your loved ones manage those challenges. See the video.
On May 29 the Pulmonary Hypertension Association hosted a virtual town hall on “Preparing for a Telemedicine Appointment.” Participants learned what telemedicine entails, how to prepare for your appointment and how insurance covers a visit. Cardiologist John Ryan and nurse practitioner Jennalyn Mayeux shared real-world experiences in delivering care through telemedicine to help you make the most of your visit. This event was part of our PHA Connects: COVID-19 and Your Health series. See the video.
On May 21, the Pulmonary Hypertension Association (PHA) hosted an online conversation about how to become an empowered patient with experts Victor Moles, M.D., and pulmonary hypertension (PH) patient Linda Santos Morgan. This event was part of the wellness series, PHA Connects: COVID-19 and Your Health. See the video.
As information changes about COVID-19, the Pulmonary Hypertension Association (PHA) continues to add to treatment access-related resources. Here’s what PHA learned this week about access to distilled water, the hydroxychloroquine drug shortage for PH patients with lupus and COVID-19 financial assistance funds. Learn more.
As information changes about COVID-19, the Pulmonary Hypertension Association addresses treatment-access concerns from the pulmonary hypertension (PH) community. Find out about supply availability, oxygen delivery and lab test requirements. Learn more.
Feeling restless while sheltering in place? Consult your doctor about how to safely resume or add exercise into your daily routine. The Pulmonary Hypertension Association (PHA) recently released five new videos designed to improve pulmonary hypertension (PH) patients’ understanding of major types of exercise. Check out the newest additions to our PHA Classroom videos.
As a new school year begins amid the COVID-19 pandemic, deciding whether to send children back to the classroom can be difficult. Three pediatric pulmonary hypertension (PH) specialists share considerations to help you decide what’s best for your child. Learn more.
Sharon Horning was looking forward to two concerts and a big car show this summer. When the pandemic forced her to revamp her plans, she took on a massive new project. Find out how Sharon and other members of the pulmonary hypertension community are making the most of summer and fall despite distancing. Learn more.
Several members of the pulmonary hypertension community have put their crafting and sewing skills to work during the COVID-19 pandemic. They’re making masks for family, friends, health care workers and other first responders. We talk to beginning and experienced seamstresses about their mask-making endeavors. Learn more.
Social support is essential while the COVID-19 pandemic physically keeps people distant. The Pulmonary Hypertension Association’s virtual support groups help you connect, learn and have fun. Learn more.
In addition to honoring volunteers who have helped keep the community together during this challenging time, Summer PHling featured a virtual version of PHA’s traditional fashion show. Watch PHers walk the virtual catwalk, showing off how they flaunt or conceal face masks, oxygen tanks, pumps and mobility devices. Watch the video.
Much of the United States – and other countries – is under stay-at-home orders. Physical distancing can cause feelings of isolation, anxiety and depression. Discover ways to connect with others in the PH community to share common questions and concerns – and connect with each other.
The Pulmonary Hypertension Association (PHA) provides the most recent Centers for Disease Control and Prevention (CDC) guidance to help the community make decisions about safety precautions and daily activities during the COVID-19 pandemic. Read more.
La Asociación de Hipertensión Pulmonar organizó una sesión de preguntas y respuestas en Facebook Live para el 24 de julio, en la que se abordará “La hipertensión pulmonar y la COVID-19: cuatro meses en la pandemia” con los neumólogos Vinicio A. de Jesús Pérez y Karla Cruz. Los Dres. de Jesús Pérez y Cruz analizarán la información más reciente sobre los brotes de COVID-19, los riesgos para los pacientes con HP y la manera en que los pacientes con HP y sus familias pueden mantenerse a salvo. Ver el video.
The Pulmonary Hypertension Association hosted a July 17 Facebook Live Q&A on “Pulmonary Hypertension and COVID-19: Four Months into the Pandemic” with pulmonologist Murali Chakinala. Dr. Chakinala discussed the latest information on COVID-19 spreads, risks for PH patients, and how PH patients and their families can stay safe. Watch the video.
Únase a la Asociación de Hipertensión Pulmonar (Pulmonary Hypertension Association, PHA) para un evento en Facebook Live en español. Este ayuntamiento virtual presenta una serie de preguntas y respuestas con Gustavo Heresi, M.D., M.S., sobre hipertensión pulmonar (HP) y COVID-19. Ver el video.
Discover timely information on what COVID-19 means to you and your family with a virtual town hall from the Pulmonary Hypertension Association (PHA). The event, covered “COVID-19, Your Child and Pulmonary Hypertension.” Watch it here.
As the coronavirus pandemic escalates, it’s more important than ever to stay in touch with your medical team. That’s especially important for parents of children with pulmonary hypertension (PH), says Nidhy Varghese, M.D., medical director of the pulmonary hypertension program at Texas Children’s Hospital in Houston. Dr. Varghese advises the nurse practitioner-led Pulmonary Hypertension Association support group at Texas Children’s Hospital and serves on the PH Care Centers Review Committee. Learn more.
People with COVID-19 have had a wide range of symptoms which may be mild or severe. The Centers for Disease Control and Prevention recently changed the COVID-19 symptom list to include cough and shortness of breath or at least two the following symptoms: fever, chills, repeating shaking with chills, muscle pain, headache, sore throat, and new loss of taste or smell. Learn about potential symptoms and warning signs.
A new coronavirus named SARS-CoV-2 is causing a global outbreak of a respiratory illness, coronavirus disease 2019 or COVID-19, which was first identified in Wuhan, China, in December 2019. Coronaviruses are a large family of viruses that range from the common cold to the Severe Acute Respiratory Syndrome (SARS-CoV) outbreak in 2003. Learn more.
COVID-19 Financial Relief Funds
Good Days has opened a COVID-19 emergency relief fund (COVID-ER) for individuals with health insurance through Medicare or the military. The new fund provides reimbursement for expenses such as food, utility bills, housing and transportation for individuals whose income is less than 300% of the federal poverty level. Learn more an apply at https://www.mygooddays.org/patients/diseases-covered/covid19-emergency-relief-fund or by calling (855) 215-2717.
The National Organization for Rare Disorders (NORD) offers a COVID-19 Critical Relief Program, which provides up to $1,000 annually to eligible patients for essential non-medical expenses such as rent, utilities and phone or internet service. NORD also offers a COVID-19 Rare Disease Premium and Medical Assistance Program that provides financial assistance for specific out-of-pocket costs associated with patient’s health insurance premiums, ranging from health insurance premiums and lab testing to therapy and equipment. For more information, visit RareDiseases.org, email or call 203-242-0497.
The PAN Foundation offers a COVID-19 Treatment and Prevention Fund for Medicare recipients with a rare or chronic health condition to use for items such as medications, medical equipment, or groceries and meals. The fund offers direct assistance of $300 for individuals who have been either diagnosed with COVID-19 or directed to self-quarantine. Learn more about rules and eligibility. Apply by calling 866-316-7263.
What Doctors on the Front Lines Are Discovering
Some doctors are finding that ventilators may not be the best choice for COVID-19 patients. This New York Times article shows how doctors are helping people with very low oxygen levels by having them change position in bed and breathe on their own (with oxygen) for as long as possible. Some patients are being helped with reconfigured CPAP breathing machines. Read more.
Registries of Those With Chronic Diseases Can Help Understand COVID-19 Wired magazine’s story shows how doctors around the world are sharing data and creating registries of people with COVID-19 who also have a chronic disease. “Each entry is just an anecdote: the bare details of each patient’s age, underlying conditions, the medicines they take regularly and for COVID-19, and how well they fare under treatment. But collectively, the registries offer a valuable picture of an evolving disease.” Read more.
Inequality Intensifies the Coronavirus Crisis in Detroit
Dr. Rana Awdish, a PHA member physician who directs the Pulmonary Hypertension Program at Henry Ford Hospital, a PHA-accredited Pulmonary Hypertension Care Center in Detroit, is among the critical care doctors featured in The New Yorker magazine. The story examines the disproportionate numbers of African Americans who are hospitalized with COVID-19 and the socioeconomic disparities behind this trend. Read more.
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