“Advocacy August” is here. Because pulmonary hypertension (PH) is a rare disease and has no cure, it is necessary that we promote awareness among those who can make a difference in our lives.
When it comes to government decisions, advocacy means helping people who might otherwise be overlooked to express their concerns to elected officials and have their needs be considered in the decision-making process.
Because we are living with a disease that most people don’t understand, we are our own best advocates and can share our experiences. However, those who live with a rare disease often do not speak out about their personal journeys.
August is a prime time to contact local elected officials because they are taking a break from Washington and are at their home offices. This can be an advantage to us. I have had the pleasure of speaking with folks here in Texas in the offices of Sens. John Cornyn and Ted Cruz.
Remember, these elected officials often are not well-versed in all rare diseases. It is our job to educate them about PH. They need to hear from you as an advocate for yourself and others who live with rare diseases.
In a recent column, I discussed the financial burdens of living with PH and the need to educate our representatives in Congress about this issue. Education is the key to making a change. The impact of skyrocketing medical costs on those of us living with PH is an excellent talking point.
If there’s any pending legislation that may impact you and others with this life-threatening disease, it is important to mention whether you support or oppose it.
When I’ve been unable to speak directly with my senators, I’ve found that building a relationship with one contact in their office proved beneficial. If the person’s time on the phone is limited, I ask if I can share my personal story via email. Often, connecting a “real person” with the realities of such a rare disease can pack a bigger punch.
You can also share your story on social media, including Facebook, Instagram, and Twitter.
Some may think that advocating takes too much time or energy. That is far from the truth. You can advocate within the comfort of your home, even in your pajamas.
The Pulmonary Hypertension Association offers some helpful resources to guide you as you contact your local elected officials. Also, you can call and speak to someone at the association if you need additional tips.
I am aware that August will be ending soon. No worries, because Sept. 5 is National PH Advocacy Day. You have a few weeks left to share your PH story before Congress reconvenes.
In what ways can you advocate by sharing your personal PH story in the upcoming weeks? Please share in the comments below.
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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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