#FightDiseaseNotWar

This holiday season – with the Ukraine conflict having raised fears of a World War III and hundreds of millions of people still lacking cures for neurological disorders, cancer, and thousands of other maladies – it’s time for people and their leaders everywhere to embrace a new global ethic: #FightDiseaseNotWar.

 

With the U.S. sadly far in the lead, nations spend trillions annually on their armed forces.

 

A Huntington’s disease gene expansion carrier who lost his mother to this devastating disease, I continue to watch HD brothers and sisters face enormous hurdles in their care – and die.

 

“Once again, Congress has failed to take action to ensure that families affected by Huntington’s disease (HD), a devastating brain disorder that impacts more than 200,000 American families, have uninterrupted healthcare coverage,” Huntington’s Disease Society of America CEO Louise Vetter wrote in a December 20 community statement.

 

As Vetter pointed out, the Fiscal Year 2023 federal spending bill, just approved by the Senate and the House, “does not include provisions of the Huntington’s Disease Parity Act (S. 868, H.R. 2050) which would eliminate the two-year waiting period for Medicare coverage and Social Security Disability Insurance (SSDI) benefits for those who qualify for federal disability because of the serious progression of their Huntington’s disease.”

 

‘Relative pennies on the national budget’

 

Vetter asserted that, despite twelve years of advocating for the HD Parity Act, “families affected by HD will continue to have to brace themselves for two years without medical care in a system that puts their needs at the bottom of the congressional priority list. Two years is too long for someone disabled by their incurable neurological disease to suffer without medical coverage, and Congress could close this loophole for relative pennies on the national budget.”

 

In Fiscal Year 2021, national defense outlays comprised almost half – $742 billion – of the $1.6 trillion discretionary federal budget. Health spending accounted for $140 billion.

 

The National Institutes of Health (NIH) – a major source of disease research – had a budget of $47 billion in Fiscal Year 2021. Its budget has showed a steady relative decline since 2003.

 

It can take up to $1 billion for a biopharma company to research, test, and market a single successful drug.

 

A new vision

 

#FightDiseaseNotWar: let’s dramatically shift our budgetary – and societal – focus by shifting more funds to the NIH, our health-related research universities, and other institutions focused on well-being.

 

The coronavirus pandemic has laid bare the deep, continuing inequalities, inconsistencies, and confounding nature of the U.S. health system

 

#FightDiseaseNotWar: let’s overhaul that system by creating a public, community-based network available to all and – instead of being driven by bureaucracy and profit – responsive to patient needs first.