Would You Fund My MS Treatment?
I’m not asking for your money. (At least not yet.) But I’ve recently seen a lot of news stories about MS patients who are.
Multiple sclerosis battler fights for $200,000 treatment
Or…
Fundraiser for Deanna
Or…
Burbage dad’s £50,000 appeal to fund surgery
With the cost of a stem cell transplant in the £50,000 range and the cost of the latest disease-modifying drugs ranging upward of $50,000 a year in the U.S., it’s no wonder that many multiple sclerosis patients are turning to the good will of others to help pay for the treatment they need.
Enter ‘Crowdfunding’
Crowdfunding is an outgrowth of crowdsourcing … the concept of reaching out via the internet to gather information from a lot of people. But, in this case, it’s money that’s being sought, rather than info. Websites such as gofundme.com are designed for general fund-raising, but they’ve helped many MS patients and their families tap the world for financial help.
A search of Go Fund Me turns up thousands of people who say they’re trying to raise money to treat MS. Most seem to have received several thousands of dollars, but a few are in the $10,000 to $20,000 range. I spotted one for a man in Georgia who is raising money to continue needed therapy after undergoing HSCT treatment in April. His funds topped $66,000.
Some crowdfunding sites, such as fundly.com, youcaring.com and giveforward.com, are designed specifically for charitable causes. You Caring has only about 300 MS-related requests, but those on that site seem to do well at reaching their donation goals, which range from a few thousand dollars to $300,000.
Most of these sites allow you to upload pictures and videos to help you tell your story, but you’ll probably want to do more than that to tell people that you’re there. Spread the word about your crowdfunding on social media sites such as Facebook, Twitter and Pinterest. And continue to post to those sites to report on your progress, (or lack of it). You’ll need to keep the funding fires burning.
The sites will take a piece of your pie
Before you travel down this road be sure to read the fine print, because there’s still no such thing as a free lunch. Youcaring.com will take 2.9% of what you raise, plus 30 cents for each donation. Gofundme.com deducts a 5% fee from each donation plus a 2.9% “processing fee” and 30 cents for each donation. (Its processing fee is a bit less outside the U.S.).
Some crowdfunding sites also raise those percentages if you fail to meet your fundraising goal. Some also charge the donors for their donations. It’s also a good idea to check with a tax accountant to see if you’ll be taxed on what you raise and, if so, whether there are legal strategies you can use to limit what you need to give back.
Crowdfunding isn’t the only way to go
There are other ways to receive help with the cost of MS drugs. Some drug companies have assistance programs and there are foundations that provide grants to eligible patients. Getting into those programs can be bit complicated and time-consuming. In the case of the foundations, some luck and being in the right place a the right time is also necessary. This will all be the subject of a future MS Wire column.
Meanwhile, please share any stories that you have about experiences with crowdfunding.
[Other posts can be found on my personal blog: www.themswire.com.]
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Michelle Martin
It's not just the MS meds that cost so much. It is the side effects and all the other meds and drs apts that make everything add up fast. In my case in 2005 I woke up one morning blind in my left eye but went to work as a mgr I had responsibilities. My assoc forced me to call my eye dr the on call dr saw me right away it was a sat morning. She told me either a brain tumor or MS. A stat MRI showed optic neuritis and 12 lesions. The report stated clasic onset signs of MS for best outcome treatments should start ASAP. My opthamologist set up the steroid IV treatments and called around until he could get a neuro to see me, That is when my life really changed. That dr like many other people in my life discriminated me. He walked into the room with a smile his expression changed quickly so i knew what was coming. He threw my chart on the table sat across the room from me never touched me and said this report means nothing to me! All you have to do is lose weight and you will feel better and everything else will go away too. So I left in tears embarrassed and angry the thought that the lesions would melt away with the fat. i did not know much about MS at that time and just went on with my life I had a husband and a 10 & 13 yr old. then in 2006 I got pregnant when I was told that there was no way I could from a horrific delivery of my daughter. I had to give birth in a high risk clinic. so in May 2007 my Angel God sent to help me was born. Then I saw a dr in Boston and the 12 lesions was now over 100!!! several different meds. some messed with my liver, my kidney, I developed an irregular heartbeat. i continued to work as a mgr working 12-14 hour shifts. after several injectables and iv then the pill form nothing slowed down my ms and I could not longer work. So in early 2013 I took an extended loa until I got approved for ssdi at less than a forth of my salary and no help with medical. So Now my check and my husbands is less than what I took home on my own. My husband pays 200 a week for our insurance but that leaves us paying 55 each dr apt 250 each xray 500-1000 each mri 250 each er visit. I have 7 drs because you have to see a different person for every part of your body so my whole check goes to just my medical bills!!! so in 3 years we went from living decent not rich to poverty and will prob have no utilities soon and maybe homeless. I went threw all of our savings cashed in my profit sharing and stocks sold my wedding ring and anything else I could of value and we are still in severe debt and can not find one person to help!!!! No one understands MS even worse when you have progressive ms and are told your only option is stem cell therapy and it is not covered by ins. So i suffer in pain daily and my 9 yr old cries and begs and pleads to stay home and take care of me. Life sucks when you have MS because people say oh you just have MS sorry we only help for cancer or other things...........
Tim Bossie
Let me first say how sorry I am, we at MSNewsToday, are that you endure through this disease each day. It is so difficult to get on each day let alone the other problems such as finances, doctors and people not really understanding what it is that you struggle with each day. The costs are an incredible burden and I know that it can put tremendous pressures on a family. We do hope that you have more good days than bad ones. Hug your family every chance you get and stay strong.
Ed Tobias
Hello Michelle,
I'm so sorry to hear about what you've been through, beginning with the way you were treated by your initial neurologist.
If you haven't already done this, may I suggest that you reach out to the National Multiple Sclerosis Society (www.nmss.org). They may be able to put you in touch with organizations near you that can help with some of your needs. They should also be able to direct you to foundations that may be able to help with the cost of your drugs and to drug company programs that are also in place to do that.
Please don't just give up. There are professionals at the NMSS who are trained to help.
Ed