HFGF Volunteer Spotlight: Alexis Wade
The most surprising thing about having a bleeding disorder for 21 year-old HFGF volunteer Alexis Wade is the challenge of managing it. “Sometimes,” Alexis says, “no matter how hard I plan, I cannot do what I want to. However, over time, I have learned that life just requires some flexibility.”
“Acceptance comes easier when you smile, revise your plan of action, and keep moving forward,” she adds.
This positive attitude and optimistic outlook characterizes the University of Central Florida nursing student. With a bright smile, and as friendly as she is kind, Alexis has been volunteering for the Hemophilia Foundation of Greater Florida since last year. Her journey with the bleeding disorders community started with a diagnosis that left her and her family surprised and looking for answers.
Alexis was first diagnosed with Von Willebrand Disease shortly after high school. She was getting ready for exploratory knee surgery when her surgeon, suspecting a bleeding disorder when he realized she had odd bruising with no apparent culprit, ordered specialized pre-operative bloodwork. When the results came back, Alexis was referred to a hematologist, who confirmed the Von Willebrand Disease diagnosis.
Her family was stunned. “The diagnosis came as a surprise to all of us, especially since I have a twin sister,” says Alexis. Then came the life-altering adjustments. After her VWD diagnosis, her hematologist recognized that her blood presentation did not match that of someone with Type I VWD. Repeated bleeding episodes meant Alexis had to have a port placed in to receive prophylaxis several times a week. Eventually both she and her mom learned how to take care of her central line.
Life with a bleeding disorder has challenged Alexis, but it has also given her a life goal; it was her experience with VWD that led her to a path into nursing. It has also given her the tools to advocate for herself and educate others about her disease.
“The greatest challenge in dealing with a bleeding disorder is running into physicians and other medical professionals who are unaware of how to treat a patient with a bleeding disorder,” she says. “The positive side of that is that I have learned how to advocate for myself and explain more about what VWD is and how it affects me more than I ever thought I would have to.”
Her journey with VWD led her to seek out, and eventually volunteer for, the Hemophilia Foundation of Greater Florida. Alexis found the HFGF after her hematologist mentioned that there was a bleeding disorders community in Florida that would send a nurse to her home to teach her to self-infuse. Originally from Saint John, Indiana, she previously volunteered there at a bleeding disorders organization as a counselor-in-training for their annual summer camp. It was therefore not surprising that, shortly after discovering the HFGF, she would begin volunteering as well.
She is a star volunteer. From advocacy to events, Alexis Wade does so much for the HFGF, balancing her volunteering efforts with her school responsibilities, but it’s all about giving back as far as she’s concerned.
“For me, volunteering is a way to give back to a community that has given me so much,” she says. “When I was diagnosed with VWD, I was lost because I didn’t know anyone else with a bleeding disorder. Becoming part of the bleeding disorder community gave me the chance to make friends with other people like me, to advocate for myself both in a hospital setting and in school, and to learn more about the various types of bleeding disorders.”
For Alexis, volunteering is a special and rewarding endeavor, one that allows her to connect with the bleeding disorders community and witness firsthand what HFGF does for patients. “When you volunteer,” says Alexis, “you can actively see the difference that helping out makes because kids can have the chance to go to camp every summer, young adults can have the chance to attend college because of scholarships, and kids can be provided with Medic Alert IDs that they might not otherwise receive due to cost.”
Thank you, Alexis Wade, for all you do for the HFGF. To learn more about HFGF and become a volunteer, visit hemophiliaflorida.org/volunteer.
Please see below for a word from our 2020 Gainesville Clot Trot Committee Champion, Joe Burke. Click here to register for the 2020 Clot Trot and fundraise for those in the HFGF community when they need it.
Friends of Bleeders,
I was born in a very rural part of Appalachia nestled in a coal mining town of Whitesburg, Kentucky. My father made his livelihood mining coal from the mountains of southeast Kentucky, and in this upbringing, our closest Hemophilia Treatment Center was 3 and a half hours away. Lexington, Kentucky was our closest bleeding disorder chapter, and materials for bleeding disorders in the early 80’s were scarce. My parents made sure to get me to my appointments, and thankfully I never missed a single doctor’s visit. I was never active in my local hemophilia camps or programs growing up because we lived so far away from the events.
I share this brief glimpse of my past to truly showcase what a treasure the Hemophilia Foundation of Greater Florida is. At age 28 I moved to Orlando, Florida from Kentucky to not only seek better healthcare, but to eventually marry the woman of my dreams. During this unsure transition from one state to the other, I reached out to Fran Haynes for some mentoring, guidance and how I could get involved in the chapter’s programs. Now, for the first time in my life in 2009, I could finally get involved in the bleeding disorder community locally, and partner with my local organization.
We’ve come a long way since the uncertainty days of the early 80’s. At a time when I needed to hear sound wisdom for important life decisions that would impact my own healthcare treatments, the HFGF was there to lend the shoulder. A few years ago, I broke my left foot from a fluke accident. Being on disability and unable to afford the rehabilitation boot I needed, the foundation stepped in to assist in getting the care prescribed. And most importantly, when I just needed an ear to share my struggles of coping with my bleeding disorder, the foundation was always there to listen and offer sound advice.
I’m involved with the HFGF because of the huge impact the team and chapter have had on my life. I stand today more educated, more sound in the choices of treatment and more confident as a patient that we are not defined by our disabilities. Through the continued partnership with the team at HFGF, my life and overall mental health are thriving because of the sound wisdom and relationships I’ve established with this organization. The foundation was and continues to be there for me throughout my journey in living with hemophilia. Every penny the foundation gets from it’s fundraisers and charity events goes directly to those who need it most. I can say this with assurance, because I once was on the receiving end of their uncanny generosity.
Join me this December 19th at Depot Park in Gainesville, Florida as we host our Gator Clot Trot. I will be in attendance as this year’s “Chair Champion,” and I can’t wait to meet each of you! Gather your teams, huddle up those groups, and let’s all walk to raise awareness for all bleeding disorders of Greater Florida.
CHECK OUT WHAT’S HAPPENING AT HFGF AND READ THE 2020 SUMMER NEWSLETTER BY CLICKING BELOW.
Leanne Buchanan, Hemophilia Foundation of Greater Florida (HFGF) Outreach and Education Nurse
Resides: Winter Springs
Involvement with HFGF: One year
Florida native Leanne Buchanan joined the ranks of the HFGF as Outreach and Education Nurse last August and hit the ground running. New to working with the disease, but with a 30-year career behind her as a practicing nurse, Leanne is thrilled with the chance to help the bleeding disorders community.
“I am loving this opportunity and everyone has been so heart-welcoming to me,” says Leanne, who has resided in Winter Springs for the past 28 years. “In the beginning, I spent several weeks crash-coursing. I feel pretty comfortable that I can answer just about any question.”
Leanne is responsible for half of the Sunshine State, from Ocala south. Missy Zippel, a 40-year plus Foundation mainstay, is responsible for the northern section.
Using Missy as a mentor, Leanne says she has been defining her role since day one. Until the pandemic, she visited patient homes and school districts where she offered training on bleeding disorders.
“Being a nurse in the school district I can say we didn’t know much about bleeding disorders,” she notes. “Hemophilia and bleeding disorders are so specific it makes it difficult, so my mission is to visit all school districts for training. I have been very well received by schools. They are thrilled to have me visit.”
Once on campus, Leanne’s first priority to make sure the kids that need help the most are getting what they need. She trains physical education coaches, nurses and teachers what to look for and how to treat the disorders. She utilized her past knowledge and data as a school nurse to first visit the schools that she knew had the largest number of bleeding disorder students.
Leanne also visits Hemophilia Treatment Centers around the state to introduce the Foundation to people and to try and help them in any way she can.
“I was talking to a mom at Arnold Palmer Hospital who said her child was being turned down by day care because of a bleeding disorder. I told her I would talk to them. She said, ‘You will?’ I will do whatever it takes to make these kids’ lives easier.”
Spreading the word about the work and offerings of the Foundation is another project on her plate. Leanne sent postcards to hematology and oncology offices throughout Central Florida—including Tampa and Clearwater—introducing herself, asking if they had any needs the Foundation could fulfill.
“We need to make sure everybody knows who we are,” she says. “I am surprised how many do not.”
A public health nurse since 1986 spanning a variety of different capacities, Leanne came to the Foundation from the Seminole County School district.
And although she admits to having an affinity toward Italy where she has visited several times, the Sanford-born Leanne loves calling Florida home.
“I wouldn’t live anywhere else besides here.”
People in the bleeding disorders community face many challenges, not least of which is dealing with the financial burden of outrageous copays and out-of-pocket expenses. For one Severe Factor 8 patient in Orlando, dealing with this burden has not come easy. Here he shares his anonymous story:
“The medication that I take finally works for me after five years of changing products and incurring multiple bleeds, stress, crawling to the bathroom because I cannot walk, and infusing sometimes twice a day for several days in a row to get a bleed under control.
I have had to send in an infusion log to justify getting my NORMAL prophylactic medications. My insurance company requires this for a prior authorization two times per year for medication that I have taken since I was two days old.
Unless I have a bleed, my insurance company will no longer ship my as-needed doses for bleeds. They send me 3 doses for bleeding episodes; if I have not had any documented bleeds they will not send the as-needed doses for bleeding the next month. Do they not understand that, God forbid I have an emergency, I will need as much factor as I can get if I’m injured? This puts me at serious risk.
Why do my copays and prescription copays not count towards my Out-Of-Pocket (OOP) expenses?
My OOP expenses per member is $7,500 and total OOP max is $15,000. I paid $15,000 OOP in 2019 for my medical bills on top of paying $22,000 in 2019 for my insurance premiums; I am self-employed and own my business. My business partner and I paid over $44,000 in total for our health plan in 2019. This does not include the OOP for my pharmacy co-pays which topped $5,000 in 2019.
This is a financial burden for me and for my family. We had to put many of those expenses on credit cards with interest rates of 22% and higher, further exasperating the financial burden that we face. This will not change in 2020; now that I am forced to work from home, I still have to pay for health plan, copays for my medication, credit card bills and medical bills that we are on a payment plan for from last year.
On top of these expenses, I incur a gym membership for $32 per month to try to stay healthy and in shape. I eat healthy which costs more. So it’s much more than just the healthcare premiums. We take control of our health, exercise, and eat healthy which is more expensive than eating processed and canned foods.
This is a problem.”
A big part of the problem is copay accumulators. These are health insurance policies that prevent any copay assistance from counting towards any copay deductibles or out-of-pocket limits. That means that patients are left with the burden of paying copays and out-of-pocket expenses from the prescription in full. Sometimes they don’t even realize this until it’s time for a procedure. Meanwhile, the insurance company gets paid twice – once from the copay assistance and once from the patient. Bills have been introduced at the legislative level to try and ban copay accumulators, but they haven’t moved far.
Your voice matters in helping these issues come into the spotlight so that patients like our patient above don’t have to suffer through financial uncertainty. Contact firstname.lastname@example.org to learn how you can get involved in helping this issue get pushed through the 2021 legislative session.
Hometown: Streamwood, Illinois
Involvement with HFGF: Four years
Natalie Rubin has first-hand knowledge of step therapy, the controversial treatment plan designed to save insurance companies money. Also known as “fail first” protocols, the patient is required to “fail” on an insurer-preferred drug therapy based on a similar diagnosis before it will cover doctor-subscribed therapy. Diagnosed at age 12 with type one Von Willebrand and a patient of Ehlers Danlos syndrome, a connective tissue disorder that brings with it illness on a regular basis, Natalie is now speaking out against the therapy.
Diagnosed at age 12 with type one Von Willebrand and a patient of Ehlers Danlos syndrome, a connective tissue disorder that brings with it illness on a regular basis, Natalie is now speaking out against the therapy.
“The goal is to get rid of step therapy all together,” says the University of South Florida freshman. “Step therapy is not effective and not helping anybody.”
Advocating on behalf of the Bleeding Disorders Coalition of Florida (BDCF), Natalie says when she was in junior high school her insurance company wanted her to take an anti-depressant for her Ehlers Danlos instead of her prescribed Lyrica.
“There were side effects, and I missed a lot of time in school because it,” she explains. “I was sick, and I had an abnormal gait that made me wobbly. Not good for someone with a bleeding disorder.”
Hemophilia Foundation of Greater Florida (HFGF) Executive Director Fran Haynes says these protocols can create life threatening problems by preventing patients from gaining access to the most appropriate medication for their condition. Further, for a member of the bleeding disorders community, step therapy is always inappropriate because the consequences of a “failure” are too serious. HFGF is a partner in BDCF, along with the Florida Hemophilia Association.
“The risk of a major bleed or cumulative damage from repeated bleeding episodes are too high,” Fran says.
BDCF is currently supporting two bills in the Florida legislature that deal with step therapy. If step therapy is allowed to continue, the BDCF asks that it must be subject to reasonable constraints, including patient exceptions and covering the provider-prescribed medication. At least 26 states have enacted some form of step therapy protections.
“Doctors should have the final say on whether a non-preferred drug may be dispensed,” notes Fran.
“The doctor wants you to take one drug, but the insurers won’t cover it unless you take others first,” adds Natalie. “They claim it works. It does not. It’s not the truth.”
Natalie is pictured here at the 2020 Bleeding Disorders Coalition Legislative Days.