Rare diseases like dermatomyositis don’t get much love.

Only one dedicated charity exists, the Myositis Association, which was founded in a patient’s basement in 1993 and whose annual report is two pages long. In 2016, their revenue totaled just over $1.5 million. By contrast, cancer, according to the Cancer Index, has over 58 charities in the United States alone and the nation’s largest medical charity, St. Jude Children’s Hospital, in 2017, took in $1.98 billion—over a thousand times more money than myositis.

What can you do? Be kind. Be supportive. Treat me like I’m going to live healthy forever. I am still a person.

The National Institutes of Health (NIH) are funding a handful of studies, the most notable through the National Institute of Environmental Health, which is looking at contributing causes of autoimmune diseases (though not exclusively or even primarily dermatomyositis).

The US Food and Drug Administration (FDA) has yet to approve any therapies for inflammatory myopathies like dermatomyositis or polymyositis. Though, to be fair, while it’s easy to criticize the FDA—especially for their record on drugs used to improve autoimmune conditions—they are not the gatekeeper here.

That said, money doesn’t always buy solutions. We throw billions to cure diseases like cancer, yet treatments for most have barely improved in decades. Bloated nonprofits have been caught red-handed committing fraud and giving as little as 4 percent of their total revenue to actual research.

Further, most advancements in medicine come from out-of-the-box thinking from independent-minded researchers and entrepreneurs, not from ultra-conservative federal agencies or risk-adverse Big Pharma laboratories.

Should you call your congressperson and ask them to direct money toward myositis research?

State-funded-science program officers and review panels rarely give researchers funding unless they have preliminary data and a decade-long history of doing similar state-funded research. This vicious cycle closes the loop to most agencies like from funding anything revolutionary. Please don’t call your congressperson and ask the government to confiscate more money that doesn’t belong to them and spend it confirming what doctors already know.

Worse, when congress decides what to fund, they are looking to either buy re-election, line lobbyist pockets, or fund their pet disease. Ever wondered why prostate cancer, dementia, and Alzheimer’s are among NIH’s top funding priorities? Because congress looks like the waiting room at a geriatric urology clinic. Ever wondered why the government spent $415 million on just atherosclerosis this year? Because while exact causes are unknown, the US population’s poor dieting and exercise habits mean that 3 million Americans now have the disease.

And don’t even get me started on why congress directs $755 million to breast cancer and $565 million to HIV/AIDS. Both diseases are as unfortunate as mine, but for the love of money, they have their own billion-dollar charities, their own ribbons, their own pins, their own months, their own colors, their own NFL uniforms, their own celebrity crusaders—Bono could bankroll research for both those diseases himself.

Simply put, unless some senator’s son suddenly develops myositis, nobody in congress cares that I or anyone else has dermatomyositis.

Could Big Pharma help?

Regulations and shareholders concerned only with short-term profits have turned corporate drug companies into clearinghouses. Point in case, after inventing the antibody blockbuster drug Humira (adalimumab), Cambridge Antibody Technology sold the patent rights to Abbott Laboratories and let them put it through clinical trials.

Similarly, Benlysta (belimumab), the first new lupus drug in 56 years, was created by scientists at Cambridge Antibody Technology and Human Genome Sciences—a nimble, 1,000-employee biotech business who used the human DNA sequence to develop protein and antibody drugs. GlaxoSmithKline (GSK) became involved to help bankroll and assume the risks of clinical trials. After Benlysta was approved in 2011, the pharmaceutical giant bought Human Genome Sciences.

Ultimately, understandably, Abbott and GSK want profits, not innovation: Abbott made over $18.4 billion from Humira in 2017 alone. Benlysta costs lupus patients and their insurance companies $28,000 for the first year. Despite poor adoption due to high costs and limited results, it made GSK $492 million in 2016.

To be fair, Big Pharma does often offer massive discounts for many of these ultra-pricey meds. Celgene offered to save me thousands on Otezla when doctors thought I had psoriasis. We just need them to start developing new ones or fund clinical trials for existing ones.

Should you donate to the Myositis Association to help find better treatments?

Is it possible writing a $50 check to the Myositis Association could fund some doctor or scientists to develop better treatments for myositis? Sure. And truthfully, if you must donate, this is your best option.

But I didn’t start this blog to raise money or awareness for myself or for myositis. I started it to share my journey and my thoughts as I go through life with something I’ve never heard of and never thought I’d have.

So what can you do?

Be kind. Be supportive. Treat me like I’m going to live forever. I am still a person.

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If you’d really like to help out with my medical bills—copays to three different specialists adds up quickly—just buy some copies of my novels on Amazon. I don’t want money for doing nothing. You want something for your money. And who knows: maybe you’ll like them.