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Why arthritis doesn't receive money for research

Fed up with autoimmune disease getting the short end of the stick when it comes to charitable donations, Dan posts a "Call To Arms."

Celebrity telethons

We need money to fix this horrible group of debilitaing illnesses, and the only way we are going to get it is to get down in the mud with the rest of the diseases. It may be unpleasant to consider these tactics, but it's exactly what we need. And we need it now.

Last time, we discussed how medical companies take advantage of patients with illnesses like myself. As you saw by what I wrote, the gouging never seems to end, and the industry seems to have no issue with perpetuating the scam. This week, I was reminded of another injustice. This crime, though, is only being perpetuated on those of us who suffer from autoimmune disease.

On TV this week was a telethon on prime time. The name of this telethon was the SU2C event -- the Stand Up To Cancer telethon. On the program was a variety of movie stars, and although I can’t remember them all, names like Lucy Lawless, Taylor Swift, and Tim McGraw come to mind. The telethon apparently raised over $81 million for cancer research.

As I caught the tail end of the event, Allison, who was sitting next to me, commented with “this is what the Arthritis Foundation needs to do.” I simply looked at her and said “you are exactly right,” and she is right. The Arthritis Foundation would benefit immensely from a yearly injection of $81 million. Unfortunately, it’s a pipe dream.

Over the years, as you may or may not know, I have tried to decipher just what it is that makes people dismiss arthritis as a trivial disease. I have talked with young people, old people, boys, girls, women, men, and even a few animals (although they didn’t say much back to me), in order to find out what makes people tick when it comes to philanthropy, and I think I’ve finally figured it out.

Everyone in this world has the capacity to care about something outside of themselves. Now, you may be saying to yourself right now that you know a few people who wouldn’t spit on you if you were on fire, and I can totally relate. I know more than a few acquaintances that wouldn’t spend a dollar to help Mother Theresa feed seventeen African children for a month.

If we are going to seriously look for a cure, it’s money that’s going to do it in the end. It’s time for a radical shift in our plea for help.

The thing is, though, you can make people like that give their time and money to a cause, and the way to do it is surprisingly easy. All you need to do is simply make these people believe that to not give money would be worse for them then to part with a few dollars here and there. Fortunately for some illnesses like cancer and AIDS, there is little work required to make that case.

Both cancer and AIDS are diseases that have very visual and apparent effects, and also both result from acts that humans tend to generally enjoy. In the case of cancer, the disease supposedly can be “caught” by doing things such as smoking, eating fast food, and sun tanning -- all three are activities that many among us would consider to be fun. In the case of AIDS, well, we all know the main mode of transmission for that particular illness, and I daresay there are not many people out there who don’t enjoy that particular activity.

So, as you can see, cancer and AIDS result from things we all enjoy doing, and therein holds the key to the mystery. We all shed a tear when kids with cancer are shown on TV, and we all feel for the housewife who gets HIV by accident with a blood transfusion. Deep down, though, it’s not those people who motivate us to donate money to these most popular of causes -- it’s the cancer-causing hamburgers and the free love that we are trying to protect with the money we throw at these diseases.

Humans enjoy enjoying ourselves, and we are willing throw money into AIDS and cancer research rather than the alternative, which is to stop having sex and to stop sun tanning. Man is unique in the fact that even though we know certain activities could potentially kill us, we do them anyway, and sometimes even get off on the danger of it all. Giving money to things like AIDS and cancer research lets us assuage both our guilt and our fear of dying when we participate in the things that might eventually lead to the contraction of these illnesses. That, in a nutshell, is why AIDS and cancer get so much money.

Giving money to things like AIDS and cancer research lets us assuage both our guilt and our fear of dying when we participate in the things that might eventually lead to the contraction of these illnesses.

Arthritis, on the other hand, has no such pleasurable activity or inherent concern of death to attach to the stigma of contracting the disease. No one puts on a condom in order to prevent the transmission of the lupus virus. No one comes in early from the beach because they don’t want to risk coming down with a case of ulcerative colitis. As people who deal with autoimmune disease regularly, we have to come to the harsh realization that our illnesses are neither sexy, nor dangerous, and they don’t have any of the deadly consequences that the top earners do. No one wants to hear about a disease that won’t affect your life span but just might make each day a little bit crappier. That’s not something that anyone is going to worry about contracting.

I did a little bit of an informal experiment and I asked 10 people, “Which of these diseases would you give $100, one-quarter, one-half, or all of your money to in order to avoid catching?” The diseases were rheumatoid arthritis (RA), cancer, AIDS, the common cold, and autism. Everyone I asked was willing to give every cent to avoid cancer and AIDS. No surprise there, but believe it or not, almost everyone was willing to give one-quarter or one-half of their money to prevent autism. Even the common cold got a few of the responders to give $100 to avoid.

No one, at all, was willing to give one cent in order to prevent contracting rheumatoid arthritis.  Even when I told them that RA was a serious disease that was nothing like the “old football injury” type pain that they probably associated arthritis with, still no one was willing to give a dollar to prevent their contracting of RA. When I asked them why, the top answer was “because by the time I get arthritis, I will be too old to do anything anyway.” The second most popular answer was “I’m not gonna waste my money on something I can take Tylenol to deal with.”

Sobering, isn’t it?

I hope this is an eye-opener for you, because it was for me. Autoimmune disease is considered an inconvenience at best, and at worst, it’s thought of as less annoying than the common cold. If we ever want to get money for research into the causes of autoimmune disease, we need to seriously re-think the way we present our illnesses. We could use some of that Madison Ave. marketing, and really bring out the big guns. Showing people the worst of the worst -- multiple joint replacements and useless hands. We need the three-year-old children who have fingers so disfigured they will never be able to write. I’m sorry if this sounds harsh, but I know now that this is the only way we will ever be able to come close to the profitability of the “sexy” illnesses, and let’s face it, if we are going to seriously look for a cure, it’s money that’s going to do it in the end. It’s time for a radical shift in our plea for help.

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