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The Road to HARPA - Post #8

December 12, 2019

For all the innovation and ingenuity in the medical field, this country performs miserably with disease prevention and early detection. For many reasons, this makes no sense.

In the case of autism, the economic argument for early diagnosis and treatment was clear:  Early intervention makes a lifetime of difference, with reduced burden on the school system and the Medicaid program.  It also leads to better outcomes for individuals. Of course, this is true of many conditions.

Years after the Wrights made that argument for autism support, Suzanne Wright was diagnosed with stage 4 pancreatic cancer. It was shocking to learn there is no reliable detection test and there are no curative treatments for the disease!

Mammograms, PSA tests, and colonoscopies have saved millions of lives, but there is nothing for pancreatic cancer. It has been nearly fifty years since Nixon declared War on Cancer. Shockingly, pancreatic cancer has the same 91% mortality rate it had in 1971.  This is the highest mortality rate of all cancers.

45,000 people die every year, like clockwork, and there is no urgency at the federal research level to address this. Nobody is held accountable for this lack of progress.  Bob Wright soon learned why. There is no army to demand a new approach. #RoadToHARPA

Launching HARPA

June 25, 2018

A segment from “The Patients Are Waiting: How HARPA Will Change Lives Now”

The Road to HARPA - Post #8

December 10, 2019

For all the work being done at the grassroots level, the Wrights knew they needed a campaign to drive awareness of autism. Despite skyrocketing prevalence numbers, there was little understanding of the condition and many barriers to progress.

Suzanne took this on as her own challenge. She dedicated herself to driving a global awareness effort to educate the world about the need for acceptance and action. In 2007, with Qatar as a lead sponsor, Suzanne secured the support of the entire United Nations to establish April 2nd as World Autism Awareness Day. Remarkably, she got this done in less than six months – a record at the UN.

Suzanne’s energy and vision were the foundation for Light It Up Blue, a global marketing campaign that marks every April 2nd by getting buildings and landmarks around the world to turn their lights blue for autism.

The Light It Up Blue campaign provided the hope that with enough support behind you, anything can be done. Only a few years later, this would prove to be monumentally harder when Suzanne faced her deadly diagnosis of pancreatic cancer. #RoadToHARPA

The Road to HARPA - Post #7

December 9, 2019

Since insurance is regulated by individual states, Bob Wright led #Autism Speaks to battle the insurance companies on fifty fronts. The biggest argument was that autism therapies were educational and not medical, and therefore should not be covered by medical insurance.

The Autism Speaks team, supported by other autism groups, took this fight to every state legislature across the country. Parents and autism specialists rallied from Albany to Sacramento, fighting for legislation to require reimbursement parity with other medical conditions. They were relentless.

As they made gains in red and blue states, they faced a new challenge: how the Affordable Care Act (ACA) would impact state insurance plans. To protect the progress autism advocates had made, they needed mental health coverage to be included in the ACA’s Essential Health benefits requirements.

Other mental health advocacy groups were fighting for the same thing. It has been a complicated journey, but this year, more than ten years after they launched their efforts, the autism army scored its fiftieth state victory! #RoadToHARPA

The Road to HARPA - Post #6

December 5, 2019

The cost of treating disease and chronic medical conditions is overwhelming. In many cases, it leads to bankruptcy, the breakup of marriages, and the loss of employment. This is tragically common for families taking care of a child with #autism.

When Bob Wright started Autism Speaks, insurance companies refused to cover the cost of behavioral therapies and treatments, even though they were evidence-based with demonstrable benefit.

Families had been paying their insurance premiums for years and expected these therapies to be covered the same way other medical treatments were.  Out of pocket costs for behavioral therapy often exceeded $60,000.00 a year.

Addressing this discrimination by insurance companies, which is exactly what it was, became an essential priority for Autism Speaks. The grassroots army was prepared to fight. #RoadToHARPA

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