Hemophilia Editor, Author at Arizona Hemophilia Association

Cindy: Healthcare Reform Update

Healthcare Reform Update As you may know, the Supreme Court ruled that the Affordable Care Act (aka Obamacare) was constitutional. What that means is that the government can require that individuals have health insurance. However, the Supreme Court also ruled that the states do not have to expand Medicaid from 100% federal poverty level (FPL) to 133% (FPL) as was required in the Affordable Care Act (ACA). Why does all of this matter to you? The ACA has certain requirements for the states. Arizona has to decide: I. What the Essential Health Benefits benchmark plan will be and report to the federal government by September 30th. Governor Brewer chose the State Employee Benefit-United Healthcare EPO with pediatric dental and vision coverage supplemental by the FED-VIP plan as the benchmark plan. It will be important to understand what is included in this plan regarding pharmacy benefits, factor product choices, etc. The plan is about 80 pages long. We are currently assessing it and will make sure to make our voices heard on any concerns for our community. II. Whether Arizona will operate its own Health Insurance Exchange or opt to have the federal government run it. The exchanges are designed to help small businesses provide coverage for their employees and for individuals who are not insured through their employer. On November 28, 2012, Governor Brewer notified the feds that Arizona will not create a state-run health insurance exchange. Arizona is one of 17 other states that have rejected a state-run exchange. The federal government has the authority to step in and create exchanges in states that do not build their own. III. Whether to expand Medicaid from 100% FPL to 133% FPL. Children are automatically increased

Joshua Schmidt – Meet Arizona’s Newest Blood Brotherhood Member

Hi, I am Joshua Schmidt. I am a Hemophiliac in Phoenix. I want to help you make your life better. Having Hemophilia can be many different things for many people. Some of us don’t have to worry about much because we have good coverage and bleeds are not much of an issue. While some of us are still struggling to get the needs we have met, and sometimes you just can’t do it on your own. Whatever your situation with Hemophilia is, there is a great way to to build the quality of your own life and that is Blood Brotherhood! When I moved to Arizona in 2010, I was in bad shape. My ankles were about to fuse themselves together before the doctor could. My wrists and forearms still need attention that I can’t give them until I get my legs are taken care of. Life was hard and the last thing I wanted was to deal with was more Hemophilia, or anything related to it. I did not want to think about doctor visits, shots, or stretching. I was also very alone. I had my wonderful family to help get me through it all, but they still don’t understand what I really go through. Nobody does but us. Sometimes we want to be left alone because we don’t want others to see us when we are down, yet we want somebody to help us through the pain we are experiencing. Last spring was an eye opening experience for me. I was going out of town and needed some shots. I called to place my order and was told I could not because some laws were changing. I went to instant panic mode.

Amanda’s Internship Experience

Throughout this semester, my last semester before earning a bachelor’s degree, I had the incredible opportunity to work as an intern for the Arizona Hemophilia Association. I first began working here in the summer as a Bayer Hemophilia Leadership Development Program intern. When school started and my time with Bayer ended, I got the chance to continue my work and receive college credit as well. This internship has been much different because I moved back to Tucson for school and worked primarily from home. If you have ever worked from home, you know how challenging it can be to stay focused! However, by keeping contact with everyone at the AHA office and traveling to Phoenix for various events, I was able to work on numerous projects to keep busy. This little guy was at my desk every day to help me stay focused! Some of my biggest accomplishments this semester have been successfully organizing a camp program, creating a blog, and putting on two events here in Tucson. At Camp HUG, I was in charge of the family challenge on the last day and it was very fun! I had been planning it out for a few weeks prior to camp and was nervous about getting it to run smoothly, but all of the camp staff helped me out. It turned out to be a lot of fun; we even made a “haunted cave” for the families to go through at the end.Another project I worked on was the Arizona Hemophilia Association blog. If you have not seen it, you can check it out at hemophiliaz.blogspot.org. I learned about how to design a blog and maintain the content on it. It can be difficult to

Tucson Craft Event

Here are some photos from the women's event held in Tucson a couple weeks ago! We made painted wine glasses, monster tulle wreaths, and glitter pumpkins! Wine glasses by Marlene and Joan Monster wreath! By Marlene Brain jello!! So yummy. Ghost Nutter Butters Glittered pumpkin :)

Insight into the Benefits of Online Communitcation

From the Hemophilia Federation of America:Adult men living with hemophilia often suffer from joint damage, arthritis, and depression from their frequent health problems. Blood Brotherhood is a national program for adult men living with a bleeding disorder that provides education, support, and establishes a sense of community. Watch this video to find out more about the program and how to get involved. Blood Brothers from Hemophilia Federation of America on Vimeo.

High-Ropes, Elephants, and Golden Eggs

A Camp HUG reflection by community blogger, Diane Lee What, might you ask, do high-ropes, elephants, and golden eggs have in common? Well, if you were lucky enough to attend this year’s Camp HUG you would understand. Camp HUG (Hemophilia Uniting Generations) is a family camp weekend offered to the bleeding disorder community through the Arizona Hemophilia Association and the Cascade Foundation. It is a chance for families in this special community to come together and participate in family oriented activities designed to improve the quality of time families are able to spend with each other as well as with other families. The camp is a great compliment to the many activities offered for the different groups within our community. Our family had not attended Camp HUG in previous years even though my children had attended the kid’s camp for many years. Each year we made the excuse that we had to work and was unable to get away or we had so many other activities going on and this was not feasible at the time. I figured my kids had enjoyed camp in the summer and wouldn’t feel they missed out. My husband and I felt “too old” to go to camp. Boy! Were we wrong! Having more flexibility with my time this year, I decided to get more involved with the activities sponsored by the Association. We had always attended the Annual Meeting and I had previously attended Washington Days, but this year I committed to being more involved with BleedHers and my son joined the EPIC group for teens. When attending the Women’s Retreat, many of the ladies convinced me that Camp HUG was an event not to be missed. They were

I’m Just As Normal As You

A reflection piece written by Jeff Johnson that we wanted to share:I'd like to approach a subject here that's been present in our community for quite some time and unfortunately isn't always dealt with as openly and honestly as it could be. I'll warn everyone now that this is challenging, both of and for, parents. Not in a negative way but in a healthy, self examining way. Still, one should probably not proceed unless one is prepared for reflection, self examination and even, perhaps, the rejection of deeply held beliefs and feelings.The subject I'd like to discuss is the attitude that having hemophilia makes one less than normal and warrants feelings of guilt or regret in a parent or should be viewed as "bad news" and cause for mourning or distress. Now, I'm pragmatic enough to admit that yes, hemophilia is a whole different level of lame and I'm not demeaning my own condition. Bleeds suck, especially when they prevent an activity or life choice from playing out as we would have preferred. And it is expensive, of course, and time consuming. Yes, it has numerous challenges. But at the same time it is important to maintain perspective. There are countless conditions worse than hemophilia and in the grand scheme of things being born a hemo is far better than being born with MS or cancer or sickle cell anemia or so on. While a challenge, hemophilia isn't any longer a death sentence or even condemnation to a life that is less than normal. Our factor today is amazing, as is our care. Compared to previous generations and the trials they experienced, today hemophilia is barely even a disorder, which is why I often joke

Bloody Tears Bring Fears

What would you do if your son woke you in the middle of the night crying tears of blood? In my sleepy stupor, I heard him say, “Mama, my eyes burn.” I was used to him waking me with a bloody nose, but I was not prepared for streams of blood running from his eyes down his cheeks and dripping onto my sheets. Within seconds my husband and I were up and fully awake. In my panic, I didn’t know if I should call 911 or a priest. It truly frightened me. Our son, Anthony, had been having numerous nose bleeds and we were early into his diagnosis of Von Willebrand’s Disease. We had not yet started factor infusions and were still green to the whole bleeding disorder community. I was well versed in how to handle bloody noses, but what the heck do I do for bloody eyes? Little Anthony and his big sister I immediately called our doctor and was reassured there was no reason for great alarm. He told me to treat it as a nose bleed. Pinch the nose, lean forward slightly, and close eyes tightly. I guess it is not completely uncommon for blood to back-up into the tear ducts. If you have ever cried hard, you know tears and snot start to run from your nose. The reverse is true as well. If you bleed profusely from the nose, the blood can run “upstream” to come out your tear ducts. It makes for a very frightening scene, but not one for any more concern than a nose bleed. Brothers being goofy Anthony has Type 2m Von Willebrand’s Disease and we now treat his bleeds with Factor VIII. His nose bleeds are under control for the most part and we haven’t had an eye bleed for

Our Staff: Jessica

Read about Jessica and how she became our wonderful program director. :) Jessica How is it, that the one thing we probably know the most about (ourselves), is often the one that is hardest to explain? I guess I will start with the generic: Hi! My name is Jessica. My last name is Casper—for two more weeks—and then it will be Klass (pronounced like good ol’ Santa’s last name, not like “class”). I am getting married in Cleveland, OH which come to find out, isn’t actually every bride’s dream destination location. Who knew? My soon-to-be husband is named Andy and we live in north Phoenix with our dog, Koko. She is the ruler of all that goes on in our home. If you met her, you would understand. I mean, look at those teeth! On a day off, you can catch me taking photos, hiking, trying a new restaurant, or spending time with family and friends. I have a large family. In fact, my parents divorced and I have half siblings on each side. Ironically, they all get along, and we all love spending time together when we can. How cool is that? I have one of those “back in the day” relationships with the Arizona Hemophilia Association. I mean, remember when there was no “Arizona” in the name? I do. It was twenty-two years ago that my brother, Jeff, was diagnosed with hemophilia. This was back in a time where no one even know what hemophilia was and it took a number of tests and accusations for that matter, to determine what was wrong. I remember the first time my brother bled, not typical skinning of the knees bleeding but much more intense, much

A Retreat Treat

Diane's experience at the Women's Retreat two weeks ago: This year was the first year I participated in the Women’s Retreat. In previous years I felt I was “too busy” and chose not to participate. However, this year I have decided to do more activities for me and my well-being. Boy, am I glad I went. Diane, Amanda (daughter), and Yolanda I had not been horseback riding in a…well…lifetime and I was nervous about mounting and riding. The staff at White Stallion reassured me and I was lucky enough to be matched with a “young feisty” steed, Rawhide. He was quite the character but we were a match. He liked to snack, couldn’t sit still, tripped on rocks, and listened when he wanted to. We had a lot in common from the get-go. Thank you, Rawhide, for helping to build my confidence. If I can ride that large school bus-sized horse without killing myself, then I can do ‘bout anything. "Rawhide" The weekend was an emotional one for me. I was excited to be spending time with my daughter and some fantastically strong women and I really enjoyed sharing our thoughts, troubles, and jubilations together. I cried and laughed and relaxed all at the same time. I would tell you more, but what happens on retreat, stays on retreat. I returned home exhausted yet rejuvenated. I am definitely looking forward to returning next year. -Diane

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