HSCT Part 2: Planning for Treatment Location and Fundraising
I was mentally spent after I’d made the decision to go for HSCT, but when I was faced with the planning stage, I felt so overwhelmed it was like a semi-truck was barreling down the highway at me.
Planning for HSCT for MS
How do I plan for something I’d never done before? A whole new set of questions had to be carefully considered, coordinated, and executed. I’m a logical thinker so to keep from having a total meltdown, I broke it down into steps as follows:
- Which facility should I choose (that will accept my level of disability)?
- What is the estimated overall cost and how will I pay for it?
- What health issues do I need to clear before departing?
- What should I take with me?
- Who should I take with me?
- How will I get there?
- What do I need set up upon my return?
Choosing a location for treatment
After consideration of multiple locations, I chose Clinica Ruiz in Mexico as they accepted my level of EDSS (6.5+), it was the most affordable (even with an additional 25-30% due to currency exchange), and it was the closest to my main residence of Canada.
Planning for all of the expenses
Besides the treatment fee itself, I had to consider what else I’d need. A close friend said to me, “Jenny, it's what you don't know, is what you need to plan for too”. Fair enough, but that really shook me up.
There were also flights. I figured flex fares were the best to buy in case of changes in treatment duration and/or airline changes/cancellations (which both ended up being the case).
I needed a recent MRI or I had to pay for one there, transfers, hotel(s) at either end of flights, food for my special diet, tips for service staff (if standard at chosen facility), rehabilitation upon return, unforeseen medical emergencies during treatment not covered by the base HSCT cost, extra medications in Mexico and upon return, specialized supplements and any/all specialists for follow up (for up to two years post-HSCT). All I could hear was the ding, ding, ding of the cash register in my head...
How to raise money for HSCT
The biggest challenge was getting my mind around how to raise the funds to pay for just the HSCT treatment. Let’s face it, it's a monumental cost!
Here are some ideas that I have heard were done by others or that I did myself. If possible, borrow off a line of credit, a second mortgage, use private insurance (this seems to be a rare possibility), or can anyone in your network lend you the funds?
I learned online that some were fundraising by throwing parties and invitees bid on donated auction items, bid on races, or creating artifacts and selling for profit. While the possibilities and ideas are endless, this is pretty challenging for a pwMS (person with MS) who is suffering immensely from the disease. Kudos to those who can pull this off.
My fundraising experience
There are helpful online groups where others are eager to share their resources on how they've successfully raised (all or partial) funds for HSCT. I didn’t have any resources, nor had a chance to save for a rainy day, so it all started with a two extremely generous friends offering to lend me money. This was massive, but I needed more.
The major fundraising platform many people use is Gofundme. I knew writing an authentic and compassionate story was key. I searched online for what other people wrote for ideas. In the end, I had a girlfriend interview me with the following questions (and recorded it):
- What is your story?
- What exactly is the treatment?
- Why are you doing this treatment?
- What is the success rate?
- What is the ‘ask’ or how much do you need?
The vulnerability tied to fundraising
Then she took the recording, edited it, and we finalized the Gofundme story. I felt gutted after the interview. Emotionally it was like lifting up my skirt for the world to see and it was humiliating (irrational yes, but I’m being transparent here). Plus, I never wanted anyone to feel obligated to donate, especially if they were struggling financially.
Here’s the thing. I had to get over it, get over myself, and publish it. Then post it everywhere on my social media accounts. I had a few people helping and organically it grew from there. I was beyond humbled by the outpouring of support, love, and selfless giving of people both close to me, and those who didn’t even know me.
Jenny shares more detail about her HSCT journey on her personal blog.
Do you live with any comorbidities aside from MS?