You don't know me yet, but I've been following your story. Although it is truly an inspiring story, it's not the timeline of events that inspired me to write to you. It's something much deeper. Your pure spirit of generosity and genuine commitment to fighting life's injustices are the qualities that have inspired each word that you are about to read.
First of all, I should introduce myself; my name is Jason Dragos and I am the founder & CEO of HealthBeMe (HBM). I started HBM because healthcare desperately needs a new face and a new voice; a human face and a human voice.
Healthcare needs a voice that empowers people and doesn't just treat patients. A voice that says; I truly care about you, as a human being, during your most vulnerable time. A voice that doesn't prioritize profit over the quality of care.
After-all, healthcare only exists as an industry because people get sick; no one chooses to become a patient.
Together We Can Change Things
Yes, this open letter is addressed to you, but it's purpose and desired impact go well beyond that. I'm writing this letter on behalf of the people who aren't getting what they need from healthcare. It's for all the people who are uninformed or unaware of other options or choices regarding their health. HealthBeMe is fighting for the MS Community and we want to join forces! Together we can help individuals who have MS become more educated and aware of HSCT which can result in greater access; making HSCT a more attainable treatment option for all.
What I'm saying Randi, is that we would like to make you: The Face of HSCT.
Why HSCT Needs A Face
As an active part of the MS community, HealthBeMe supports a number of people who are struggling to regain control; Dana George, Tatiana-Hass Castro and Yolanda Whitted are just a few of those people. Each day these amazing ladies fight to keep MS from taking away control and to keep some type of normalcy in their lives - I'm sure you can relate. This is a little peak at how we've been helping Dana get her HSCT treatment.
What's frustrating is that the healthcare system hasn't eased their fears, but in many ways, has caused them to feel even more vulnerable. So, despite the support received from family, friends, the MS community and HealthBeMe, they are unable to focus on improving their overall health and wellness. Instead, they are weighted down by anxiety - it's in their voice when they speak, and visibly obvious in their body language. As it stands now; people who have been connected to information regarding HSCT treatment, are left feeling somewhat, bittersweet. The emotions that come with knowing there is a treatment out there that can possibly give them a second chance at life, can include a sharp gut wrenching feeling when they learn about the overwhelming cost of treatment. Putting such a high price tag on life comes with a flood of anxiety - what about my family? How will we pay for this? Indeed, there are wonderful organizations out there that help provide support and help in funding efforts (i.e. hosting 5K races, yard sales, bake sales, T-shirt sales), but as people continue to empty their life savings, and give countless hours of time, they are still left with the stress that just worsens their health. I've seen this anxiety first hand, and it's just one more reason why HealthBeMe does whatever we can to help ease it; whether for a day or many days. We want to help relieve the anxiety that comes along with seeking information, education, fundraising, etc. We try to find a better way to help. We make it less about MS, and more about them.
I've read about and listened to all of the reasons why HSCT isn't more widely available. Frankly, all of them are simply justifications that defend self interest. They're just scare tactics. That said, it just further proves that the pharma companies stand to lose billions if insurance companies aren't reimbursing them for overpriced monthly prescriptions of Tsyabri, Gilneya or Rebif. With 8 more years in toll, it's safe to say that the FDA stands in the way of wider access of HSCT. I really struggle with this, why? Because, either they have an ego the size of Kanye West, or they are blatantly disregarding the years of successful outcomes of HSCT, in other countries. Either way, it isn't good because it appears as if they are 'incentivized' by pharma. Why is it that US citizens have to be burdened with going to other countries to receive a treatment that carries countless success stories? I mean, last time I checked US Citizens are human beings - just like other citizens across the countries on planet earth. Yet, the FDA acts as if those living in other countries are non-humans, with a completely alien DNA structure. Come on, HSCT is already working on humans! FDA, get out of the way!!
When solutions to these very real problems that real human beings like yourself, Dana, Tatiana, Yolanda and so many more exist, I can't just accept the fact that nothing can or should be done.
Why You? Randi Juarez, The Face
You were chosen because you can't accept that fact either. See, your generosity of spirit and your relentless fight for fairness, is inspiring and unmistakable. You embody so many qualities that represent the purpose that fuels HealthBeMe!
You Are A Lover and A Fighter
The bottom line is Randi, you and I both fight for people. We fight for fairness, we fight for potential, we fight for better futures, we fight for friends, we fight for strangers. We fight because our hearts are full of love and compassion. We fight because we truly care.
Finding you was not easy. It was so important that we found the right person. That's just how serious we are about it. Trust me, we've really done our homework. To get to this point we read the many articles written about you, your blogs, your Facebook posts and your tweets. Ok, I know what it sounds like...but I promise, we're not stalkers! We just needed to be sure that you were the one. In almost everything we read, you were always depicted by someone you care about as a fighter. A fighter in the sense of, you fight for what matters and for why it matters.
You Advocate For The Innocent
After learning your story with HSCT, and seeing your generous spirit radiate among your friends, family, co-workers and community, it helped us feel confident that you were the one. Then, going a step further, when we learned that you advocate for the wrongly convicted, I personally was convinced. Whether you may have a personal connection or story that motivates you to do this, the fact is.. .you do. It really takes a strong willed person to take on this fight. You are definitely that, Randi.
In my mind, the wrongfully convicted and people being denied HSCT are very similar. No one would choose to be in prison for a crime they did not commit. On the other hand, no one would choose to be prisoner to their body - as MS forces one to be. In both situations, there are really good solutions that exist.
Release wrongfully convicted. Provide access to HSCT.
You Are A Giver Of Care
Firstly, let me clear the air, I do not want you to feel that I have a personal disdain toward healthcare, or an unrealistic perspective. I know my tone can seem very one side at times, but that is simply to convey my passion and commitment to the problem, and my hope and optimism toward a better solution. Also, please don't think I am speaking generically about the people in healthcare. I have met so many amazing people in healthcare, as I'm sure you have as well. They absolutely exist! My point here isn't that the people are inherently bad - the good people, who do care, are victims to the broken system too.
I/we just want to make a positive impact on people's lives through better care and end the opportunistic money grab that has become an industry common place.
As a nurse, I'm certain you share that same passion. My mom was a nurse for 20+ years. While I can't relate entirely, I do know and have seen that truly caring about 'Why' you do 'What' you do, is the only way to make an impact and survive in your profession. I believe you do that.
You been part of clinically supporting people with MS and you've been on the other side as well. There could be no other experience that could compare. You can empathize and support better than most everyone else. For that, you are a hero!
For being the friend, wife and mother you are a hero! For being a giver of care, advocate for the innocent and a fighter...you are The Face of HSCT!
You are The Face for each of these faces. I want you but these people and many more need you! They are all fighting for HSCT alone when we should be fighting together. Alone we chirp but together we roar!
So What Now?
Nearly every movement has a central figure for people to rally behind. A face. With you as 'the face of HSCT' we give people something and someone to believe in and to relate to. We give people hope. We help people thrive together, rather than just remain alive alone. We gain power and become empowered as a passionate group.
I realize that you still need to completely recover after having your own treatment. See, this isn't a ransom letter, it's a passion letter, so you are the priority. When you are ready, happy and healthy... then we can get started! We will do the leg work but our collective passion will allow us to make a true impact.
After you completely recover, the first step will be to have an actual conversation. We are putting together a plan to build a collective voice around you and HSCT. Together we aim to achieve one or all of our three goals (plus any goals you have).
- With a collective voice, we can generate more awareness for HSCT as a viable treatment option.
- With a collective voice, we can influence or encourage the FDA to speed up the process of getting HSCT approved for MS in the US.
- With a collective voice, we can negotiate the cost of HSCT with those providing the treatment in Mexico and other international treatment facilities. Together we are better!
So Randi, please just know that you are loved, respected and revered by people all over. We have been sending you nothing but good vibes since we first learned of you and your story. You are an inspiration! You are cared for and you are loved. Take some time, let this sink in and then please feel free to contact me directly. jason.dragos(at)healthbeme.com
With love and sincerity,
Love what you see? Well, guess what?!
YOU COULD BE NEXT...
Your story matters. We want to honor YOU loud & proud. Let us know the real you by signing up to become a #webe & let the good vibes roll!