This idea for the “It’s Worth Fighting For.” organization wanting to partner with a foundation all started when The Boxing Club hosted Maania Hopper’s 30th Birthday Charity Event. Where her and her loved ones gathered together to celebrate and receive donations to put together care packages for patients in treatment at the UCSD Moore’s Cancer Center. As a current cancer patient in treatment herself, we were so inspired by Maania’s selflessness we wanted to do anything we could to help her and her foundation. This woman has shown such amazing positivity and strength through her fight with cancer that we wanted to throw a special fight night event in her honor.
There are so many different cancer foundations but we love what Rare Cancer Aware stands for because they focus on the patients that are fighting a special battle. Their goal is to help those diagnosed with rare forms of cancer by minimizing the obstacles people with rare cancers face with respect to treatment options, cancer research, and organizational support. They are trying to create a future that holds all cancer patients with equal access to care, resources and treatment development in our united fight against cancer.
Maania is currently still in the treatment process, but was nice enough to answer a few questions for us to learn about her vision and a little bit more about herself.
Q: What made you want to start your foundation?
A: A little over three years ago I noticed a lump in my neck. At first I didn’t think much of it being only 26 years old, but I did the right thing and followed through with the appropriate doctor’s check. After a series of labs, ultrasounds, scans and ultimate biopsy it was confirmed that I not only had cancer but an extremely rare cancer that hardly anyone knew about –poorly differentiated thyroid cancer. Now most people associate thyroid cancer with high survival rates, which is wonderful, but for the rarer forms such as mine the prognosis is very poor and survival isn’t spoken much of at all. Naturally this scared the living daylights out of myself and my new fiancé and family.
It wasn’t until then that I learned the dark world that not only cancer patients had to navigate but even more isolated and difficult rare cancer fighters had to face. My cancer does not respond to the traditional infusion chemotherapy so off the bat it was off the table. And aside from surgery, my rare type also didn’t respond to the standard thyroid treatments such as radio-iodine therapy. I had surgery to remove my thyroid where the tumor was, I was locked up for days and away from people for weeks due to receiving the highest dose of radio-iodine treatment available because I was so radioactive. For the next 8 weeks I endured radiation to the neck region to try and prevent it from spreading, but the cancer managed to spread into my lungs somewhere along the way. This meant I had exhausted all standard forms of treatments and left with “the talk”. I was told there was no more left to do and I probably had at least another 5 years on some oral drugs that could keep me alive a little longer.
But at only 27 I wasn’t ready to just give up. I learned that once you exhaust standard forms of treatment, which rare cancers do rather quickly, you are left to your own devices to search clinical trials and wish for the best. I was fortunate in that my then fiancé, now husband, was in medical school and could understand the medical jargon across all these clinical trial information pages. But I couldn’t imagine how people who didn’t have someone close they could review these trials with were doing it. In addition to that, because the FDA requires you to make your clinical trial cancer specific after the second phase of trials (it usually takes about 5-8 trial phases before a drug hits the market as approved) that the only trials I could go for are the first phase of trials that were open to everyone. Why? Because no one was going to invest millions of dollars into a drug that only reaches a few rare people, they’re going to focus on more common cancers. So not only did I not have any standard form of treatments, that probably won’t change because the way the system is setup it systematically displaces rare cancers from meaningful research developing. So there I was, competing for a slot of 1-90 people across the country against all kinds of cancers rare and common to get on a clinical trial that was only in its first phase, meaning being tested on humans for the very first time. I couldn’t believe it. I was lucky enough to enroll in two, however both failed.
Luckily, my husband had the foresight to have my tumor genetically tested to see if any targeted drugs could match. Turns out I had a P53 genetic mutation that is actually common in 50% of all cancers. However we don’t have any targeted therapies for that mutation in the U.S. That’s when my husband and I decided to head to Beijing, China for a gene therapy that treats the P53 mutation. We lived there for 3 months and I was able to eradicate the tumors in my upper lungs successfully, buying me a significant amount of time. It angered me that China had access for the past 10 years to a drug that could save so many lives here in the U.S. It’s amazing how advanced yet so far behind our medical treatments are at the same time.
When I exhausted treatments in China and returned, my oncologist was able to appeal to a couple pharmaceutical companies to get me on their immunotherapy drugs off-label. Insurance denied covering it because it wasn’t approved for my type of cancer and insisted I must pay the half a million dollars for just a year’s worth of treatment. Clearly, I and most people with rare cancers don’t have the kind of money to just afford off label cancer treatments. It was the kindness of the pharmaceutical company that agreed to give me the drug for free in exchange for the information for research purposes. Had they not given us this opportunity, I’m not sure I’d be alive today and still fighting.
This journey of mine showed me that rare cancer fighters face unique challenges that need to be addressed in our society. Half of all cancer patients are diagnosed with a rare cancer –that’s a huge portion of cancer patients that are at this disadvantage.
· Incorrect or late diagnosis
· Conflicting information regarding appropriate treatment
· Deemed unprofitable resulting in limited to no interest in research to develop effective therapies
· Limited access to advanced clinical trials due to restrictive and exclusionary requirements set in drug approval process
· Heavier financial burden due to lack of standard treatments and insurance compliance issues
· Limited patient support groups relevant to the unique obstacles rare cancers encounter
For these reasons I knew that someone had to do something, and why not me?
Q: What is your ultimate goal for the foundation?
A: Rare Cancer Aware’s mission is to provide meaningful public awareness about rare cancers and offer support programs for the advancement of both care and research for people with rare cancers.
Rare Cancer Aware is solely dedicated to creating new avenues to advocate and garner support for overcoming the unique obstacles and challenges people with rare cancers face amidst limited treatment options and organizational assistance.
When facing the fight of your life and little is known to assist you in doing so, navigating the system is lonely and intimidating. It is our goal to unify those that have been affected by rare cancers and collectively illuminate the challenges and lack of resources available for some of the most vulnerable and neglected in our society.
Through the continued growth of Rare Cancer Aware, it is our organization’s mission to revolutionize the way we understand and treat those with rare cancers through various outreach programs both at the local and national level. We are committed to advocating for rare cancer patients, survivors and their loved ones.
Q: What successes have you had so far that you are proud of?
A: We are brand new, however, we’ve spent the last year growing a following on our Facebook page highlighting rare cancer patient issues, sharing new treatment breakthroughs and opportunities for rare cancer patients. We are going to be launching our website this Summer, applying for grants to help us generate further awareness in the community and kick start our research database program, our medical expert to patient volunteer program, which we hope eventually spurs enough debate and support to influence some legislative change in the drug approval process that is more inclusive of rare cancer patients. Europe and Australia have already begun to make significant headway due to the same issues. If we could be where Europe’s Rare Cancer Organization is in years to come, I will be more than proud. For now, there’s a lot to be done but we’re ready to get started.
Q: Now let’s learn a little more about the girl behind the scenes. If you could travel anywhere in the world right now where would you go? And who would you bring?
A: Oh my. Anywhere in the world? There’s many new places I’d love to travel to like Argentina or Cuba. However if I had my pick, I would love to return to Italy with my husband. He’s never been and we’re both very much into history, the arts, architecture and wine that I feel we would have a spectacular time together. That’s one of the things I wish we could do more of, travel and see the world together as many young married couples do but we’ve been faced with some heavy challenges preventing it from happening. Aside from the physical strains of cancer, medical expenses are high and don’t leave much room for a trip like that. Someday though!
Q: What food could you eat every day and not get tired of?
A: I don’t think I could ever get tired of cheese…nor give it up haha.
Q: What is the most adventurous thing you have ever done?
A: Aside from traveling to China for medical treatment…hang gliding. I went solo hang gliding off a smaller cliff and then tandem off a larger much higher cliff with an expert. Scariest thing I’ve done. And I’m afraid of heights. Still am LOL.
Q: If you had to take 3 only things with you on a deserted island what would you bring?
A: A book of Rumi & Hafiz poetry, a giant journal, and a box of 400 pens. I need to read and write to stay sane.
Q: What are some of your favorite things to do in your free time?
A: Free time is hard to come by these days since I work full time as a brand manager for a manufacturing company, also running a video production company on the side handling creative direction and producing, starting this non-profit and battling cancer haha. But when I do, it’s best spent with my husband, our little fur baby kitties and my family & friends. I’m old school and love to get us together for dinners around the table. For myself, I love to read and write as much as I can. A far sighted goal of mine is to write a book one day. That would be amazing but we’ll see.
Q: Lastly and the most important question lol. Are you a dog person or a cat person?
I love dogs but I have to be truthful and say I am a cat person. I’m actually known as the cat lady in our circle of friends. We have two boys and two girls and they are hilarious and unique in their own way. I love that working from home means I get to spend more time with them.
May 03, 2017