One Mother's Story

Introduction of Self and Family

Want a great bio?! I know, who ever can write their own bio and still feel good about yourself after deserves a metal. I wrote my bio. I read the 3 sentences, then messaged one of my older brother's who is away to the islands for med school, and said simply. “I suck.” He said send me what you have. So I typed the 3 sentences, and he said, “Give me 2 minutes!” And then he sends me this bio that made me just cry. Then, he messages, you are way more than any bio, Paisley. That is where I am, as a parent of a child with Severe Hemophilia. I have become accustomed to this lifestyle. Arguable numb at times (which is a front by the way). It never goes away, it's always there. I don't ever wish he didn't have it. Because I feel defeated by it if I dare speak those words. I don't ever want him to feel defeated, much less by something that makes up apart of who he is. Don't get me wrong, he is also more than a bio, he is more than Hemophilia. He is my son. And he is not defined by his bleeding disorder. He is intelligent, he is an artist, he is a “master builder”, he is silly and serious, he wants to join the service someday. He is My Hero.

Justin's Diagnosis

Justin had a normal pregnancy. He was born at 40+ weeks. His due date was 06/06/06. He waited a week and came on the 13th. So now someday will be celebrating a Friday the 13th birthday! Anyway, he came and we were just beyond excited! Everything was going swimmingly, until I got up to use the restroom. I saw blood on my chest, and quickly realized it was coming from Justin. And that is where our hemophilia story begins. Justin's PKU heal stick was bleeding. The nurses there said I was opening it every time I fed him and told me to be careful how I was holding him. I felt horrible. I can't even hold a baby right?! So they sent us home, telling me not to worry about it but continue to change his band-aids. So there I am not trying to be a over sensitive, naive, first time mother. He continued to bleed. We continued to change the band-aids. The next morning I wake up and panic. He never woke in the night for me to feed him! He was awake but lethargic. I was so scared. Opened his swaddled blanket and there was a lot of blood. I did as the staff from the hospital said, I didn't go to the ER. I went to our assigned eds. I walked right in without a call or appointment. I opened the blanket & the doctor only spoke Spanish! What are the chances right? She started telling me with urgency to go. I could only make out building with many colors. Needs blood. I wrapped him back up and my sister was driving. I didn't put him back in his car seat, I held him. Tighter than I have held anyone.  I had no idea what building we were looking for. But we got on the 51 and drove. Then, there it WAS, THE BUILDING OF MANY COLORS. PCH (Phoenix Children's Hospital)! They rushed us back and did an iv in his head. And this is when I first let out a giggle through my tears. His party hat. I can so vividly remember that hat. They gave him this medicine, and he stopped bleeding. I said, “I want that. I need to know what that is.” The nurse smiled and looked up at me and said, “Oh honey, you're going to get a lot more of this.” Boy was she right!  .........

After all that, we started our adventure that is hemophilia. We are forever grateful for our extended family, our first line of defense, our Team of supporters at the hemophilia Clinic. Some of the scariest words I can remember from one of our first appointments was, “You are going to be his biggest advocate. You will be informing doctors/nurses of hemophilia. At times you may know even more than they do.” What the heck? So empowering, yet at the same time, terrifying. Terrified. What a responsibility to take on, a child with a chronic illness/ disorder. Who am I to handle any of this? I suck. And that's where our extended family comes into play. I have my immediate family. I have Chris' immediate family. We are lucky they are as supportive as they can be. But our clinic family is unbelievable. I realized, very soon after and continually throughout the past 10 years that they have my back. Then, we were embraced by the AHA! Another amazing extended family. And they have been there every step of the way.


I think that's what I appreciate so much about hemophilia & the community it has built. It is undeniably unpredictable. Yet, it remains to be under control, and that's where I feel lucky that he has severe. We are proactively treating him. What a wonderful thing. To also know that I can at anytime get a question answered, a fear calmed, and the support to serve my sons needs. Knowing this helps empower me as Justin's in home care-taker/advocate. That is not always the case in other areas of chronic illness.  Most of my “friends” are now other mother's with children with chronic illness, medically complex kiddos, or still to be determined cases. And believe me when I say that the support my family and son have received has been unparalleled. A lot of these mothers don't have support from their families, or even at times, spouses. So being able to go to the clinic and feel understood helps me to be able to learn, focus, and listen to and head the guidance of  what  the pros can teach me.

Justin's Port Placement

Fast forward a year! It's another transitional time! Port placement. You know they prepare you as much as they can before. Which is all truly awesome but when your first attempt at sticking the fake baby with a needle, you break the needle. It can play some pretty messed up mind tricks. ... Scary handing your child over to have a necessary procedure done. And once he comes out, there is no turning back. Crash course of everything you have studied for is all coming down on you. All the little steps, mixing, washing, and bracing yourself for the real deal. That's where the little nasty affair happens. PIC Line. I was forewarned. Not to fall in love. Oh but I did. I fell hard.  And needless to say, I then grew into the port after about 9 years.... It took My husband and I and our 2 older girls to give his medicine. Chris holding, the girls, blowing bubbles and trying to comfort him. I infused. Then, it all starts becoming life as you know it.  A few years pass, and we are pregnant with our second son. All the preparations of having a child, maybe a boy, with that chance of hemophilia. Then, that's when we learned he was no longer coming as planned. Robert, had Trisomy 13. We delivered him still. Pure heartbreak, and we embraced it for what it was. That is something that having a child with chronic illness kind of prepares you for. Nothing is ever, as planned. Never again really. We slowly started to gather the pieces and get back on the roller coaster of everyday life.

Justin's School Beginnings

Justin didn't do preschool so kinder was our first attempt at breaking out into the big world of normalizing him. It can be a little scary and overwhelming sending your little one to school. But then, you start thinking of how do I explain this in a not so overwhelming way to the teacher and school nurse. Before I could even get nervous about it, we were contacted by the social worker that has helped us each year up until this past year with introductions. What a relief! She had everything printed up and was there to really truly educate the staff. And show support to them for me. Lighten the load. After each year I was able to be more and more comfortable and use her as a model to what I would do the following year. This past year I went it solo. I felt comfortable doing so because not only had I sat in on a couple but because she was only a phone call or text away to help. Once again, having that support to fall back on is so important in all transitions of hemophilia. I was never made to feel as though I should know this by now, or when are you going to start taking this on like a big girl. It was always, are you sure, we don't mind, it's what we're here for!

While Justin was in kindergarten, we were happy to be able to welcome Cruze to the family. Cruze didn't have a smooth as entry to life. The entire pregnancy was nothing but stress.  They saw red flags all over. Heart, GI, kidney's, bladder, 2 vessel umbilical chord with a cyst. And really low fluid throughout. And just other things, it was easily every week I went in, there was something new. We were prepared to not be bringing another son home. But we didn't give up. After much discussion “Suggestion” of terminating him from the doctors, we didn't. The fluid that was surrounding his organs including his heart was of concern. But even more so is if Cruze were to be born with hemophilia. Once again, the support our family received from the clinic was amazing. They helped me advocate for Cruze's life and with his best in mind. Thanks to them I would be delivering at a hospital more fitted for our families needs. And it paid off greatly. Cruze was tested immediately and did not have hemophilia. But his slew of other medical issues that came to surface in time were relevant. I didn't have to be separated from him the way we would have been otherwise. Cruze is in stage 3 kidney failure, and progressing. His GI issues are still under surveillance. He actually goes in for his EKG tomorrow and shortly after an ECHO because his kidney disease has now caused high blood pressure which we have started treating. In his short life he has had multiple procedures, fixing his kidney reflux being one. One procedure where he actually stopped breathing under anesthesia, that's pretty scary. He has had all sorts of therapies and still continues therapies to help him today in his developmental preschool. He is vibrant and looks up to Justin in every way. As we are still figuring Cruze out, we are just trying to do whatever we can to help him become self sufficient. I feel truly blessed with all the things that were seen in his ultrasounds. It made it so much easier, rather than trying to convince doctors of what was happening, that we were being pointed in the next direction.

Our youngest daughter, Cali, who is now 2. She was watched closely during pregnancy, just because of history. But she came right on time. Without a hitch. I was able to be at home at 24 hours. She had some food protein allergies, similar to Cruze, but no where as severe. And seems to be developing right on track. She is the only one in the house not taking medicine. I think she feels left out at times.  That's the thing with chronic illness, and the awesomeness of the Hemophilia association and hopekids. She is included in those activities. I think we have always tried, along with the older girls who are now 20 & 17, to not let their brothers' medical stuff drown out their spark as well.

Port Removal

February of last year Justin's port has had it. He had a good run I feel. 8 years! It was time for the big jump. Probably one of the scariest things. That means I was once again in the hot seat to learn something so out of my natural range of being Mom. Time to start finding those veins. And once again our support system was there every step of the way. There were many times I felt like I can't do this. But with the much needed encouragement at the clinic and support through many mini meltdowns from failing to hit a vein the first, second, or third time, we were on the learning curve. They all had so much patience with me. At a point we actually had some help from the therapist there in clinic to help Justin when he was having trouble hitting. Not to mention, Justin was my biggest cheerleader.  I can't count the times Justin would positively encourage me, probably also secretly trying to convince himself at the same time that is was all going to be ok.

Justin’s Camp HONOR

I wasn't in the hot seat for long though. A few short months later Justin was going to be attending his first year at Camp HONOR! Camp Honor is by far one of the greatest upsides to having hemophilia. I know this, because when I asked Justin his favorite part about having Hemophilia this was one of his top 3. Not only is independence bread there, but the normalizing of his life, is at that camp. At camp he learned to administer his own medicine. At the same time, building bonds with his peers. Surrounded in an environment of kids of all ages that face similar obstacles.  What a life changing experience. As I was waiting at the end of the week with no expectations. Just hoping he had a good time and felt independent while away. Realize that was the very first time he had been away from me his whole life for more than a night. When the buses come to a stop the parents are anxiously waiting outside the doors to greet their children. I was one of them. He got off the bus and held up his stick! I knew right then that he had braved the first self poke that week. The pride on his face, filled my heart with gratitude. Something I could not give to him was absolutely provided to him. I then waited to get to the truck to cry tears of gratefulness and happiness, mixed with a little sad that this is his life. He has continued to give his own medicine, for the most part, regularly. He has hard days, when he cries, or he misses and feels the failure and I try and pick up those pieces by helping him. But he was encouraged to take the leap.  And it has been a successful transition so far.

Our family was introduced to the AHA right away. Our family is not anyone who would search out a support group. They reached out to us. I am so thankful they did. Our medical staff is like I said our first line of defense. But the Association is what brings out the positive. Providing the extra support and family opportunities to educate ourselves in the confusing world that is medical. Hemophilia is truly a family ordeal. One is affected, all of us are. The association gets that. The hemophilia community is so important. The relationship we build with  the association staff, our nurses, and drs, and in Justin's case his study nurses is huge. It encourages us to advocate on a bigger level, help bring awareness, it also validates what we know as parents already. Our children & their condition matter. The efforts to make his life easier on all levels does not go unnoticed. Every time we have gone in for a visit in clinic and association, is always educating and uplifting.

HopeKidsAZ

Something about having children with chronic illness and other complex things is attending family functions. Simply going to the movies, going to the grocery store, being a regular at the hospitals is exhausting. It's emotionally and physically draining. Even mentally preparing the night before, not sleeping before or after tests have been done. Waiting for results. It takes a toll. It is hard to not be overcome with emotions at appointments at times. You have to keep it together. That's where survival as a parent or caretaker comes in. Wanting to have a busy schedule of simply sports, karate, music or dance lessons be what is occupying your down time. Not medical hardships. So when a friend of mine that I had met, her child was chronically ill. She mentioned to us that maybe HopeKids would be something we might be interested in. (Hopekids is for children and families that have a chronic illness.) We thought, oh well it's worth a shot right. So after my friend nagging me over and over to send in our application, we were accepted into the HopeKids club. When we as a family can attend an event and not be worried if it is something our kids can attend and participate in, it's so much more relaxed. It's very similar to attending an AHA event. There isn't going to be something there my son won't able to do. It's a hemophilia friendly environment.

Boot Camp

Which leads to my next example of the greatness that is made available to Justin and others.  Justin and I were given an opportunity to attend a “Boot Camp”. This “camp” was held once a week for a couple of weeks. It was after hours in clinic. The boys that all went to camp together were able to revisit that in a more intimate way. While at the same time the parents were given support and information separately on different topics each week. One night I couldn't help but feel something so awesome. Justin had gotten in the truck and as usual we went over what we learned that night.

He said: "Mom, a boy was crying tonight.”

I  didn't know where he was going to go with this so I waited.

“He cried, Mom. He cried just like me. And when he started to cry another boy told him 'it's OK, because I cry at home too.”

Right at that moment it was just what Justin needed. His heart was softened for that boy. He completely understood him. As well as being completely understood himself. At the completion of the Boot Camp they received patches and a banner to showcase their accomplishments on. He proudly has this hung in his room and displays his stick from Camp in the guest bathroom for all guests to see.

These are the experiences that are necessary in order for him to grow. In order for him to be a little braver next time & even try a new vein. In order for him to be independent, he has to be given these opportunities to test his limits, but feel safe enough that he knows his team is there for him to catch him or cheer him on! I know Justin is young, and we haven't been through all the transitions that are yet to come, whatever they may be. I can with confidence know it will be OK. The biggest is behind us, and him independently administering his own medicine & his knowledge of hemophilia, in my eyes as his mother, is the most important. And anything that is waiting in his future in regards to hemophilia, it will be OK. In the past 10 years treatments have come so far. To imagine what he will be apart of in his lifetime is exciting.  With the support team that he has grown to know and that we all love is a very big part of that. Now that we are expecting our last child, who is a boy. It's comforting to know, if he is born with Hemophilia, that we have this community already as a foundation. And at the moment he is born, our hemophilia team is going to be right by our side.

Josh Traulsen, our new program director

Josh was born and raised in Phoenix, Arizona and has worked for non profits most of his life.  As a child Josh’s parents, Jennifer and Richard Traulsen were very active in the camping community and spent years working at Camp Honor each summer, bringing Josh along to learn the ropes. Beginning in 2003, Josh spent 3 weeks each summer working with Camp Swift, a program dedicated to bringing underprivileged youth to camp, as a counselor and eventually unit head. 

 Josh graduated Arizona State University with a degree in Non Profit Management and Leadership and a Certificate in Special Events Management and Urban Planning.  While at ASU, Josh volunteered as the Volunteer Coordinator for the My Nana’s Best Tasting Salsa Challenge. 

For the past year Josh was with the East Valley Jewish Community Center as their Director of Children Youth and Camping but is happy to be a part of the AHA Team as the new Program Director! In his free time, Josh likes to rock climb, hike, bike, play guitar, and cook.  He is a certified lifeguard and canoeing, archery, and climbing instructor and is hoping to bring some of his skills to new camp programs.  He is looking forward to meeting all the members of our community as he plans events for all of our social programs and prepares for Camp Honor.

Welcome Our New Administrative Assistant

Cindya J Tona Morrison

Cindya (CJ) was born and raised in Sonora, Mexico.  She finished her education  in Sonora,
and worked with children and teenagers as a teacher while living there. Cindya moved to Phoenix in 2009.  In 2010 she became part of a nonprofit organization as an intern. While working at this nonprofit she became even more interested in helping others.That is when she decided to focus her career search on nonprofit organizations.  During her search she foundEsperanca, a nonprofit organization where she formed part of their organization for about 2 years. Cindy was very motivated when she discovered the Arizona Hemophilia Association.  She was moved and positively impacted after learning about the services and support the AHA provides to hemophiliacs and their families in our communities. 

Cindya is married and has three children. In  her free time  she loves spending time with her family. Cindy also likes watching movies, reading, and taking road trips.  Cindy is very exited to be a part of AHA's incredibly hard working team and community.  Cindya is looking forward to meeting all the members and working together as a team!

Cindya es bilingüe y espera se sientan con libertad y confianza  de  llamar  o preguntar sobre cualquier duda, los  atenderá con gusto. Ella está feliz de formar parte de la asociación y espera pronto conocer a todos los miembros de la comunidad. Cindya está ahi para servirles y ayudar en todo lo que se necesite y también aprender cosas nuevas.

Affordable Care Act Update

New Report Shows Real Benefits of the Affordable Care Act for the People of Arizona

 

 On July, 31 of 2013 the Obama Administration issued a new report highlighting the benefits of the Affordable Care Act for the people of Arizona.  Thanks to the health care law, the 82% of Arizonans who have insurance have more choices and stronger coverage than ever before.  And for the 18% of Arizonans who don’t have insurance, or Arizona families and small businesses who buy their coverage but aren’t happy with it, a new day is just around the corner. 

 

“Soon, the Health Insurance Marketplace will provide families and small businesses who currently don’t have insurance, or are looking for a better deal, a new way to find health coverage that fits their needs and their budgets,” said Health and Human Services Secretary Kathleen Sebelius.   

 

Open enrollment in the Marketplace starts Oct 1, with coverage starting as soon as Jan 1, 2014.  But Arizonafamilies and small business can visit HealthCare.gov right now to find the information they need prepare for open enrollment.

 The health care law is already providing better options, better value, better health and a stronger Medicare program to the people of Arizona by:

Better Options

 

The Health Insurance Marketplace

Beginning Oct 1, the Health Insurance Marketplace will make it easy for Arizonansto compare qualified health plans, get answers to questions, find out if they are eligible for lower costs for private insurance or health programs like Medicaid and the Children’s Health Insurance Program (CHIP), and enroll in health coverage. 

By the Numbers: Uninsured Arizonans who are eligible for coverage through the Marketplace. 

·         947,878 (18%) are uninsured and eligible

·         695,083 (73%) have a full-time worker in the family

·        338,111 (36%) are 18-35 years old

·         411,776 (43%) are White

·         50,017 (5%) are African American

·         366,713 (39%) are Latino/Hispanic

·         26,771 (3%) are Asian American or Pacific Islander

·         544,266 (57%) are male

866,371 (91%) of Arizona’s uninsured and eligible population may qualify for either tax credits to purchase coverage in the Marketplace or for Medicaid if Arizonatakes advantage of the new opportunity to expand Medicaid coverage under the Affordable Care Act.

Arizona has received $30,877,097 in grants for research, planning, information technology development, and implementation of its Health Insurance Marketplace. 

New coverage options for young adults

Under the health care law, if your plan covers children, you can now add or keep your children on your health insurance policy until they turn 26 years old. Thanks to this provision, over 3 million young people who would otherwise have been uninsured have gained coverage nationwide, including 69,000 young adults in Arizona.

Ending discrimination for pre-existing conditions

As many as 2,794,358 non-elderly Arizonans have some type of pre-existing health condition, including 410,684 children.  Today, insurers can no longer deny coverage to children because of a pre-existing condition, like asthma or diabetes, under the health care law. And beginning in 2014, health insurers will no longer be able to charge more or deny coverage to anyone because of a pre-existing condition.  The health care law also established a temporary health insurance program for individuals who were denied health insurance coverage because of a pre-existing condition. 4,861Arizonans with pre-existing conditions have gained coverage through the Pre-Existing Condition Insurance Plan since the program began. 

Better Value

Providing better value for your premium dollar through the 80/20 Rule

Health insurance companies now have to spend at least 80 cents of your premium dollar on health care or improvements to care, or provide you a refund.  This means that 423,981Arizona residents with private insurance coverage will benefit from $18,711,067 in refunds from insurance companies this year, for an average refund of $71 per family covered by a policy.

Scrutinizing unreasonable premium increases

In every State and for the first time under Federal law, insurance companies are required to publicly justify their actions if they want to raise rates by 10 percent or more. Arizona has received $3,000,000 under the new law to help fight unreasonable premium increases.  Since implementing the law, the fraction of requests for insurance premium increases of 10 percent or more has dropped dramatically, from 75 percent to 14 percent nationally.  To date, the rate review program has helped save Americans an estimated $1 billion.

Removing lifetime limits on health benefits

The law bans insurance companies from imposing lifetime dollar limits on health benefits – freeing cancer patients and individuals suffering from other chronic diseases from having to worry about going without treatment because of their lifetime limits. Already, 2,091,000 people in Arizona, including 769,000 women and 570,000 children, are free from worrying about lifetime limits on coverage. The law also restricts the use of annual limits and bans them completely in 2014.

Better Health

Covering preventive services with no deductible or co-pay

The health care law requires many insurance plans to provide coverage without cost sharing to enrollees for a variety of preventive health services, such as colonoscopy screening for colon cancer, Pap smears and mammograms for women, well-child visits, and flu shots for all children and adults.

In 2011 and 2012, 71 million Americans with private health insurance gained preventive service coverage with no cost-sharing, including 1,406,000 in Arizona. And for policies renewing on or after August 1, 2012, women can now get coverage without cost-sharing of even more preventive services they need.  Approximately 47 million women, including 916,996 in Arizonawill now have guaranteed access to additional preventive services without cost-sharing.

Increasing support for community health centers

The health care law increases the funding available to community health centers nationwide. In Arizona, 17 health centers operate 139 sites, providing preventive and primary health care services to 408,737 people.  Health Center grantees in Arizonahave received $67,579,387 under the health care law to support ongoing health center operations and to establish new health center sites, expand services, and/or support major capital improvement projects. 

Community Health Centers in all 50 states have also received a total of $150 million in federal grants to help enroll uninsured Americans in the Health Insurance Marketplace, including $1,435,991 awarded to Arizona health centers.   With these funds, Arizona health centers expect to hire 30 additional workers, who will assist 40,731Arizonans with enrollment into affordable health insurance coverage. 

Investing in the primary care workforce

As a result of historic investments through the health care law and the Recovery Act, the numbers of clinicians in the National Health Service Corps are at all-time highs with nearly 10,000 Corps clinicians providing care to more than 10.4 million people who live in rural, urban, and frontier communities.  The National Health Service Corps repays educational loans and provides scholarships to primary care physicians, dentists, nurse practitioners, physician assistants, behavioral health providers, and other primary care providers who practice in areas of the country that have too few health care professionals to serve the people who live there.  As of September 30, 2012, there were 274 Corps clinicians providing primary care services in Arizona, compared to 103 in 2008.

Preventing illness and promoting health

As of March 2012, Arizona had received $9,400,000 in grants from the Prevention and Public Health Fund created by the health care law. This new fund was created to support effective policies inArizona, its communities, and nationwide so that all Americans can lead longer, more productive lives.

 A Stronger Medicare Program

Making prescription drugs affordable for seniors

In Arizona, people with Medicare saved nearly $123 million on prescription drugs because of the Affordable Care Act.  In 2012 alone, 65,267 individuals in Arizona saved over $45 million, or an average of $689 per beneficiary.  In 2012, people with Medicare in the “donut hole” received a 50 percent discount on covered brand name drugs and 14 percent discount on generic drugs.  And thanks to the health care law, coverage for both brand name and generic drugs will continue to increase over time until the coverage gap is closed.  Nationally, over 6.6 million people with Medicare have saved over $7 billion on drugs since the law’s enactment.  That’s an average savings of $1,061 per beneficiary.  In addition, the average premium for a basic prescription drug plan in 2014 is projected to remain stable for the fourth year in a row, at an estimated $31 per month.

Covering preventive services with no deductible or co-pay

With no deductibles or co-pays, cost is no longer a barrier for seniors and people with disabilities who want to stay healthy by detecting and treating health problems early. In 2012 alone, an estimated 34.1 million people benefited from Medicare’s coverage of preventive services with no cost-sharing.  In Arizona, 434,397 individuals with traditional Medicare used one or more free preventive service in 2012.

Protecting Medicare’s solvency

The health care law extends the life of the Medicare Trust Fund by ten years.  From 2010 to 2012, Medicare spending per beneficiary grew at 1.7 percent annually, substantially more slowly than the per capita rate of growth in the economy.  And the health care law helps stop fraud with tougher screening procedures, stronger penalties, and new technology. Over the last four years, the administration’s fraud enforcement efforts have recovered $14.9 billion from fraudsters.  For every dollar spent on health care-related fraud and abuse activities in the last three years the administration has returned $7.90.

To see the report for Arizona visit: http://www.hhs.gov/healthcare/facts/bystate/statebystate.html

To hear stories about how the Affordable Care Act is helping people across the country visit: www.whathasobamacaredoneformelately.tumblr.com

 

Welcome Brent, Our New Community Advocate

 

Meet Brent Davila, the newest member to join our team at the AHA. Brent Davila grew up as a camper going to Camp HONOR, and was later a counselor for several years. Brent feels lucky enough to be working to help provide other members of our community with the same wonderful opportunities that he has had. At the AHA, Brent will be focusing his energy on our outreach and advocacy programs. Brent’s goal is to facilitate opportunities that would allow members of the bleeding disorder community to advocate for themselves. Few can understand and explain the challenges that those with bleeding disorders and their families face better than the very people living with these challenges every day. This is why Brent believes the Speaker’s Bureau is such a valuable tool. It gives individuals from our community with a vested interest in the well-being of families with bleeding disorders, a chance to let their voice be heard, and a chance to have a say in the matters that are important to us all. Moving into the future, Brent believes it would benefit the community at large to have an actively involved group of individuals that are comfortable with advocating on their own behalf, and on behalf of people with bleeding disorders everywhere. Brent hopes to help make this a reality. Brent believes that our community has shown that we can accomplish incredible things when we all work together.

If you are interested in becoming a part of the Speakers Bureau, please contact Brent at the Arizona Hemophilia Association at 602-955-3947

George Coppock, Our New Team Mentor

George Dickson Coppock IV was born in Cave Creek, a small town just north of Phoenix, AZ. Most of his younger years were spent on his parents’ 7 acre farm on Cave Creek causing trouble with his 3 younger siblings. In 1986, his father opened a small family operated construction company, "Cave Creek Adobe" where George and his younger brothers would work during the amazing Arizona summers. George’s father believed in providing future generations with an affordable alternative for building an energy efficient home. George attended the local Cave Creek public schools until his 5th grade year, when his mother decided to home school the family. For the next 2 years, schooling was followed by working in the "Adobe Yard" as it was called. Upon completing his 8th grade entrance examination, George enrolled at Foothills Academy, a college prep school in the Cave Creek district. He attended Foothills Academy until his junior year when he switched to Cactus Shadows High School. Graduating in 2001, George looked forward to a career in the family business but wanted to further his education. He enrolled in PVCC a local Community College to pursue a career in engineering but soon found his passion in serving and helping others. 

In the summer of 2001, George attended Camp HONOR for the first time and it was truly a life changing experience for him. In the years to come, George would bounce around from job to job, from providing turn down service at the Four Seasons, to custom machine fabrication for off road trucks, until finding his home at the Hemophilia Association. George really looks forward to serving the Hemophilia community in the future for many years to come.

Welcome our New Development Coordinator

Nicole Wheeler

 

Nicole has worked in numerous non-profits including American Cancer Society, Lymphoma Research Foundation and the Wellness Community. Her non-profit experience focuses in donor cultivation and fundraising events such as Walks, Golf Tournaments, Galas, Fashion Shows, Car Shows, and more. A native to Arizona, Nicole has a passion for building relationships with people in our community and raising funds to support those in need. Nicole recently bought her first home! She spends a majority of her spare time remodeling it with her 9-year-old son, Dylan. Nicole and Dylan love do-it-yourself projects and a good challenge! Nicole also enjoys playing kickball in a competitive adult league, hiking and country swing dancing any chance she gets. When she’s not working or spending time on her house, she plans 10, 20 and 30 year high school reunions in the valley, which is typically quite entertaining!Nicole looks forward to utilizing her experience to help the organization grow its current events and hopefully add more that will increase our fundraising opportunities as well as continue to develop relationships within the community!

 

Legislative Day 2013

Tyler Pulleys Experience

 

 

 

I went to the Lunch on the Lawn to meet with some legislators to help educate them on bleeding disorders.  We also wanted to see if they were in support of the Governors expansion of Medicad.  My mom and I met with 3 representatives.  One was with Rep. Larkin.  He was very interested in my factor and how much it costs every month.  All of the Representatives were very surprised at how much factor costs.  We invited them all to lunch on the Senate Lawn where we had mexican food and a mini Salsa Challenge.  It is important for us to go to Lunch on the Lawn every year so our legislators remember us and can help us with issues we might have.  And my dad had the best salsa for the 2nd year in a row!!!

Tyler Pulley- 12

Legislative Day 2013

 

 

Vickie Parra's Experience

 

Alyssa and I were hesitant, to say the least, to attend the Legislative Days Lunch on the Lawn.  This was our first time attending and really didn't know what to expect.  It was quite intimidating thinking about sitting down with Senators and Legislators, especially when you are not very political!  We arrived early and attended a meeting so that we would have some idea of what to expect.  That meeting was a breeze, raised my confidence and off we went to our meetings.  Only to have both meetings cancelled, I was disappointed but not for long!  While having lunch on the lawn, the Senator and Representative from our district sat with us and we were able to discuss the Medicaid Expansion.  We were invited into the Senate Session, were introduced and had a very pleasant experience.  We look forward to attending again next year!  As intimidating as it may sound, it is a fun/informative experience, and there are plenty of people around that are willing to help you. 

Washington Days Reflections

Diane Lee's Experience

(from left to right, Josh Schmidt, Yleana Hughes, Jessica klass,

 Sarah Fey, Jim Durr, and Diane Lee)

March 13, 2013

It was an honor to be selected to attend the National Hemophilia Foundation’s Washington Days on behalf of the Arizona Hemophilia Association this year.  The trip is a chance to really feel part of our democratic system of government while participating in a process advocating for our bleeding community.  This year the NHF had over 300 members attend to meet with the congressional leaders from all around the United States.  This was the largest turn-out for Washington Days they have ever had.  From Arizona, we were able to send a team of six and were able to meet with many of the Representative offices and Senatorial staff from Arizona. 

Our primary focus this year was to lobby for support of HR 460, The Patients’ Access to Treatment Act which would set regulations on insurance companies preventing them from creating a Tier IV prescription drug list in which they could charge a co-insurance of ten to thirty percent.  As you can imagine, this amount of co-insurance would make much of our factor and medications cost prohibitive to us even with insurance.

We also told our personal stories of how the local Hemophilia Treatment Centers (HTC)have benefited our families and requested that any cuts that may be made to budgets either spare or at least be fairly distributed across agencies.  The Center for Disease Control (CDC) and the Maternal and Child Health Bureau (MCHB) are agencies that fund and support our Hemophilia Treatment Centers and they have suffered deep cuts already.  We do not want any further cuts.

 

I was impressed at how receptive and respectful each of the offices were and how each staff member we met with expressed interest and was willing to listen to the constituent’s stories.  Many of the people we met with knew little of how expensive our medications were and I feel our stories helped to impress the importance of preventing the insurance agencies from pricing us out of our treatments. 

The trip was a fantastic opportunity for our Association to speak out and advocate for our community and I would be greatly honored to continue to speak out on behalf of our needs.

 

Together our voices cannot be ignored.  We will be heard!