30 Days of PH: I Advocate to Honor My Son

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by BNS Staff |

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Photo courtesy of Annie Whitaker

Day 22 of 30

This is Annie Whitaker’s (@PHAAustralia) story:

My name is Annie Whitaker, also known as Annie Boxsell Whitaker. I am a Queensland nominee for Australian of the Year. I was nominated because I have worked over the past 22 years advocating for patients, caregivers, and families living with pulmonary hypertension (PH).

I co-founded the Pulmonary Hypertension Association of Australia after working closely with PHA and PH Central in the U.S. I have been driven to my achievements to honor my son, Timothy Walker, who died from PH in 2006.

When he was 19, Tim complained of arm pain after moving furniture. He developed swelling in his arm, and then had chest pain and shortness of breath. Tim already had a pulmonary embolism by this time. When he was seen a few months later by his respiratory physician, he was told that he had PH. It was not until months later that we realized the gravity of that diagnosis.

Tim was prescribed Viagra and told he may not survive until Christmas, which was a few months away. There were no drugs available in Australia to treat PH at that time. Viagra was subsidized by the government to treat erectile dysfunction, not PH! At that time, the only way to access any PH drugs was to enter clinical trials with the hope that pharma companies would continue to pay for treatment once the trials were completed. This was risky, but Tim had no choice but to put his life on the line.

As Tim’s situation continued to worsen, we found one professor in Sydney who had knowledge about PH, and we started a new journey from there.

Over the years, I’ve helped campaign for new PH drugs to be made available in Australia and for them to be subsidized by the government. I helped create “PH Patient Days” in conjunction with the PH medical specialists in Australia and New Zealand.

Due to my near-constant presence online, I have made many wonderful friends around the world. My family’s hope for other families in Australia is to never have to endure struggling with PH on their own.

Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.