How Will You Answer the PH Community’s Call to Action?

This PH Awareness Month, take action by voting on Election Day

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by Mike Naple |

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New research shows an increase in pulmonary hypertension (PH) mortality rates, and we must respond with the force of a dazzle of stampeding zebras.

The study, “Pulmonary hypertension mortality trends in United States 1999-2019,” published in the Annals of Epidemiology and the topic of a recent Pulmonary Hypertension News article, found the PH-related mortality rate in the U.S. increased by roughly 2% annually over the last two decades.

This new research caught my attention for a few reasons. First is the time frame of the mortality rate increase. Twenty years is roughly half my lifetime, and I’ve spent six of those years with a formal PH diagnosis.

Second, as writer Andrea Lobo noted in the PH News article, the researchers wrote, “[Pulmonary hypertension] due to both chronic lung disease and left heart disease deserve ongoing focus as the total number of deaths with PH in these conditions remain very high and reflect a major public health problem.”

The World Health Organization has designated five different groups to classify pulmonary hypertension. I am included in Group 3: PH due to lung disease or chronic hypoxia (lower levels of oxygen in the body).

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Talking about mortality as part of the human experience can be uncomfortable for anyone. In these pandemic times, conversations have felt heavier with the weight of mortality hanging over our words. Add in a chronic illness or rare disease like PH, and that discussion can veer from uncomfortable to frightening in no time.

Taking action

Scary as this new research might seem to those of us with PH, putting our heads in the sand doesn’t make it disappear. If we want to change that 2% increase to a 2% decrease, we must sound the alarm. That’s exactly what the researchers suggest, saying, “We believe that the current findings indicate a call to action.”

Taking action, mostly through advocacy and writing, is how I adjust to life with PH. There are many different avenues for action in response to this study. I would argue that one way to spur action is to vote.

Election Day is a week from today in the U.S. From our city council member to our member of Congress, we have the opportunity to exercise our right to vote for leaders and lawmakers to represent us at local, state, and federal levels. The individuals we elect to public office are the decision-makers who develop policies and pass legislation — actions that can affect healthcare and quality of life for people with PH and the broader chronically ill and disabled community.

Federal and state lawmakers promote and debate legislation that can influence health policy. They will often use studies, not unlike the research on PH mortality, to frame or support their legislative proposals. Members of Congress are also responsible for passing the federal budget and allocating tax dollars to different government agencies and programs. Their decisions affect, for example, the amount of federal funding and resources that go toward supporting rare disease research at the National Institutes of Health.

One alarming outcome of the PH mortality study is the disproportionate number of deaths in women, Black people, and older individuals compared with other demographics, and how “these differences are worsening over time.” As part of their call to action, the researchers said, “there is a need to prioritize research … focused on common causes of PH.”

Advocating for more federal research dollars is a critical part of discovering new medications and treatments, improving quality of life for people with PH, and raising awareness of the disease. Yet, the lawmaker who is sitting across from you in that meeting is just as important. Elected leaders have a tremendous platform from which they can make their own calls to action.

As we look ahead to a new Congress next year, I want it to include as many champions for the PH community as possible. That’s why voting is an important part of the advocacy ecosystem.

Bring on the stampede

On a more local level, the city council members, mayors, and state officials who are voted into office can also be the leaders who pass Pulmonary Hypertension Awareness Month proclamations. Election Day in the U.S. always coincides with the start of PH Awareness Month. It’s the perfect time for a dazzle of zebras to answer the call.

What makes a stampede so powerful is individuals working together to create a larger collective force. And there are so many different ways to take action, whether it’s by casting a ballot, writing a letter, hosting an event or support group, or advocating for better access to supplemental oxygen therapy.

This month, when people hear hoofbeats, all they should see is a stampede of zebras.

Follow Mike on Twitter: @mnaple.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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