Through the eyes of survivors and family members, BAD BLOOD chronicles how a “miracle” treatment for hemophilia became an agent of death for 10,000 Americans. Faced with evidence that pharmaceutical companies and government regulators knew the product was contaminated with deadly viruses, the hemophilia community launched a powerful and inspiring fight to right the system that failed them and to make it safer for all.

Produced and directed by two-time Emmy Award winning filmmaker Marilyn Ness, BAD BLOOD honors the memory of those who were lost.

To learn more visit www.badblooddocumentary.com

Have you ever had a dream that you just knew you had to fulfill?  Something you just knew your life would not be complete without?  So it was for “Brownie”, a thirty-something airline pilot living (and flying) with hemophilia.

Brownie started flying at the ripe old age of ten.  His first flight lesson recorded in his logbook is dated 1986!   He even remembers how he had to sit on phone books to see out the window, and his flight instructor had to strap blocks onto his feet so he could reach the pedals for his lesson.  He says, “Almost since I could talk, I have talked of becoming an airline pilot.  I waited until I was ten because that was when I could help out enough around the house to earn enough money for a flight lesson!”

His dad was a private pilot and he says his parents were a huge positive influence in his life.  “They taught me from a very young age, that I could do whatever I set my mind to,” he states.  He says he has been told that he used to fall asleep in the back seat of his father’s plane before he was old enough to know what was going on.  He and his dad still share a love of flying today.

When asked if his having hemophilia got in the way of his dream of flying he said, “My hemophilia has been a significant hurdle in becoming a pilot and continues to provide challenges in my career.  I have never been as concerned about my hemophilia as the FAA is!”  Each year he has to pass a flight physical along with all other commercial pilots, the only difference is, he also has to obtain a note from his hematologist stating that he is healthy enough to fly.  He says, “I have had to work harder to get my medical certificates than the average pilot, and this has made me more appreciative of my opportunities.”  Brownie infuses prophylactically to avoid any problems with his flight schedule and he always makes sure that he has factor with him when he flies.  “There is no time for a bleed when you are running on such a strict time schedule,” he says.

As if flying with hemophilia wasn’t enough, Brownie is also an avid hunter and fisherman, even though as he replies, “my wife probably wishes that my dad had never exposed me to the outdoors!”  Depending on the season, he is either hunting or fishing on his days off.  He has been tournament fishing since about 1993 and hunts mule deer, whitetail deer, waterfowl, turkey and pheasant on his families’ ranch in Nebraska.  He also hunts near his home in Kentucky for waterfowl, deer and turkey and in Texas for dove and quail.  He says, “Hunting involves a lot of walking and hiking over some treacherous terrain, while fishing requires standing for up to nine hours straight.   The joint pain gets harder and harder to overcome, and I am sure that at some point I will have to slow down – but for now I figure I better get it done while I still can!”

Many dreams have come true for our friend “Brownie”.  When asked if there was ever a time when he thought his hemophilia might get in the way of achieving his dream he said that he actually quit flying for a while when he went to college.  He assumed that the FAA wouldn’t allow him to get the medical certificate needed to be a pilot.  He nearly gave up his dream and began studying agriculture management at Texas Tech, but when he learned he could get his medical certificate he went to flight school in Oklahoma to finish his flight training.  “Never let anyone tell you what you can’t do,” he says.  “There were times that I thought it wouldn’t be possible, but determination and perseverance pay off.”  Brownie let his dream lead him to the skies and he is flying high with hemophilia!

Twenty –one year old Andrew Schnitker has always loved football and hockey; and even though he has severe factor VIII hemophilia, these sports will continue to be a huge part of his life.  That’s right, because even though Andrew can’t play these sports due to two target knee joints, he has high hopes of becoming a sports broadcaster after his graduation next December.

Andrew grew up in Dallas, Texas, and also has a brother who has hemophilia.  His mom knew she was a carrier because her dad had hemophilia, so she knew Andrew would have hemophilia before he was born.  “The thing I like least about having hemophilia is having target joints; both of my knees are bad. I had a port a cath from age 5 to 13, and started prophylaxis then since I started developing target joints before I was five because I had an inhibitor,” he recalls.   Andrew’s parents kept up his prophylaxis and he eventually beat his inhibitor.

When he was a boy, Andrew loved to watch the Dallas Cowboys football games and remembers watching the Dallas Stars hockey team win the Stanley Cup with his dad.  He really wanted to play, but was never allowed to.  “Mom and Grandma wanted to keep me safe,” he says.

Since Andrew has always loved sports, and has been acting since he was five years old, he has found a way to combine the two into a career.  He has been studying communications at the University of Texas in Austin, and hopes to someday have a job in the sports field.  You see, there is more than one way to have a career in sports; Andrew hopes to possibly be a sports writer, editor, producer or reporter.  He says, “I love sports, it’s something that brings people together, and to see the drama unfold is a thrill.”

Andrew is the president of his fraternity and says he has spent the last four years teaching all of his fraternity brothers about hemophilia.   He says, “I would rather have people ask questions and learn about my bleeding disorder than try to hide it or be embarrassed by it.  It is a disorder that not a lot of people know about and I want to clear up their misconceptions.  I would never want to use this disorder as a crutch.”

Andrew currently does a Radio show on campus.  “I’ve been the sports director on 91.7 KVRX for a year.  I do the Longhorn College sports talk, it is an FM spot Tuesdays at 7:00PM,” he explains.   He started out as a guest on the show, and finally was given a show of his very own.  He jokes, “I just kept volunteering until they gave me my own show!”  He says, “I have also done an internship with ESPN radio.  I love it because you get to create a character.  You can show up in athletic shorts and a T-shirt, it is such freedom- so enjoyable.  It’s a stress release for me.” He says he is not sure what his eventual job will be, but for the summer he has an internship with the CBS affiliate, doing sports writing, producing editing, and maybe even some reporting.   He is excited about his future and says he can’t think of anything better than to get paid for doing something you love.  He even thinks he would be willing to move anywhere, just to get a job in sports.  He says, “It’s funny, when I was in school, I hated English, but loved geography and history.  Now I may be a sports writer!”

Andrew’s advice to other kids with hemophilia is, “Don’t put yourself in a box that says, “I am a Hemophiliac!” It does make you unique, but you just have different challenges.  Embrace it, but don’t let it change who you are.  And Andrew’s advice about going to college: “Choose a major that you’re interested in, or really like.  College will provide some of the best experiences of your life…learn as much as possible and get involved at your school.  Everyone in college wants to meet new people and learn about different cultures, so jump in and embrace it!  The more learning and growing you do during your college years the more likely you will be to find the job you really want!”  That sounds like good advice from a twenty-something who has it all together and will soon be reporting from the world of sports.

www.hemophilia.org , www.hemopiliafed.org , www.uneedpsi.org

2010

Employers: Small businesses can receive tax credits if purchising insurance for employees.

Insurers: Cannot impose pre-existing condition exclusions on coverage for children. Must cover preventive services without copays. Cannot remove coverage when a person becomes ill. Cannot impose lifetime coverage limits.

Uninsured: Individuals with pre-existing conditions receive immediate access to coverage through a high-risk pool. Dependent children can remain on parents’ plans until age 26.

Early retirees: Employers to provide coverage for retirees and their spouses, surviving spouses and dependents over age 55 and not eligible for Medicare.

Medicare Part D enrollees: A $250 rebate check received for those entering the “doughnut hole” gap in coverage in 2010. Rebate payable by April 1, 2011.

2011

Insurers: Required to spend at least 80 percent of premiums on medical services.

Medicare Part D enrollees: Receive a 50 percent discount on brand-name prescription drugs when in doughnut hole coverage gap.

Those with health care savings accounts: Federal tax on those who spend health care savings account money on ineligible medical expenses increases to 20 percent.

Over-the-counter drugs: Except for insulin OTC drugs without a prescription are not reimbursable from an FSA or HRA, and are not a tax-free reimbursement from an HSA.

W-2: The value of your health coverage must be disclosed on your W-2 form.

2012-2013

Taxpayers: Medicare payroll taxes increase to 2.35 percent for individuals earning more than $200,000 and families earning more than $250,000.

Those with flexible savings accounts: A federal limit of $2,500 for individual pretax contributions per year.

2014

Employers: Companies with 50 or more employees must provide affordable coverage or pay a penalty.

Insurers: Prohibited from refusing to sell or renew policies, can no longer deny coverage for adults with pre-existing conditions, limits ability to set prices on the basis of sex, health status or other factors and prohibited from imposing annual limits.

Uninsured: Most Americans required to buy health insurance or pay fines of $95 per individual and up to $285 per family. Families will pay half the amount for children. Families can receive subsidies to buy insurance if they earn no greater than four times the federal poverty level

(about $88,000 per year for a family of four). Individuals and small businesses can buy packages through state exchanges.

2015

Uninsured: Penalties for not carrying insurance increase to $325 per individual and up to $975 per family. Families will pay half the amount for children

2016

Uninsured: Penalties for not carrying insurance increase to $695 per individual and up to $2,250 per family or 2.5 percent of taxable family income – whichever is greater. Families will pay half the amount for children.

2018

Taxpayers: A 40 percent excise tax imposed on high-cost employer-provided policies ($10,200 for individual coverage or $27,500 for family coverage).

2020

Medicare Part D Enrollees: Prescription drug coverage gap eliminated.

Yesterday at 4:15 pm, Feb, 20, 2010,  sweet baby girl Kelsey Matthews passed away peacefully with her Mom, Dad and big brother Keeton lying by her side. Though her short time on our earth was a struggle from the beginning until the end, Kelsey touched the lives of so many people in ways she will never know.

Kelsey’s mother Patti created a blog – theupfamily.blogspot.com which chronicled Kelsey’s journey as she fought to overcome so many enormous medical obstacles. Though she was unable to make it on this earth – her story was followed by so many people, including complete strangers, who were touched by the Matthews family’s courage and Kelsey’s determination. Especially moving were the incredible and numerous lessons of faith by those who loved her most – her Mother Patti and father Andy Matthews – our sweetaffliction.com co-founder. Their unrelenting love and faith has been an incredible example to so many of us who long to feel what it is like to trust in God and his plan. We know through the Matthews example and our Lord Jesus Christ that Kelsey is in a better place and will wait for her loving family to join her someday in God’s grace.

The Matthews family welcome flowers and would love any donations to be made to the Down Syndrome Guild of Dallas. Funeral arrangements can be viewed at www.theupfamily.blogspot.com

Below are some emotionally moving pictures the Matthews were kind enough to share with us of their family sharing some final moments with Kelsey the day she passed.

God Bless Sweet Kelsey Girl Matthews and her mommy, daddy and big brother.

Posted by David

My name is Jonathan and I have severe Hemophilia A. I am 31 years old, married to the love of my life, have four kids, and I am a Financial Advisor. I have a real passion for the hemophilia community and am constantly looking for ways to give back. My wife and I started a Non-Profit Foundation called “Hope for Hemophilia,”and are constantly working on ways to reach out to others in this growing community.

This past year we started a web site designed to help connect the community even more by utilizing social networking technology. The site is www.hopeforhemophilia.net. We hope that ultimately this will become THE web site for the hemophilia community.  This site will ultimately help people living with hemophilia to gather and develop information through life-giving relationships. We envision this being the main point of gathering for the hemophilia community because we are so spread out geographically.

Over the past couple of years, I have had the opportunity to travel and speak at many different hemophilia related events. As I have traveled, I have seen a wide variety of approaches to individual care, not so much on the part of HTC’s, but rather variety in terms of what individuals themselves are doing in  managing their own care. One of the first questions asked is “Do you prophy dose?” Which is slang for “Do you treat prophylactically?”

I have heard many different thoughts and ideas about prophylactic treatment, versus on-demand treatment, from nurses, doctors, manufacturers, home health agencies, and caregivers. However, I would like to take a moment and offer a few thoughts from one patient’s perspective. Please keep in mind, I am assuming that your Doctor or HTC has recommended you as a candidate for a prophylactic regimen.  I always recommend that you seek the professional advice of your health care provider before making any changes to your treatment.

Many people focus on the inconvenience of infusing, but what about how convenient it really is. Compared to what was available 10 years ago, we have a very streamlined process.  Most of us are VERY fortunate that we have factor readily available, and given our circumstance, I think it is worth taking advantage of.   If your doctor and HTC agree that you are in fact a candidate for prophylaxis, then by all means, do it!

Most people don’t realize that EVERY time you bleed into a joint, it damages and therefore weakens your joints. This is important because each time you don’t infuse you are placing your future health at risk. Steven Covey, a well respected author, says that we often address the urgent rather than the important. This is interesting when discussing this concept because for those who only treat on-demand, I believe they are letting the urgent (the activity, or the bleed) become the thing they pay the most attention to, rather than paying attention to the important (prophylactic treatment and/or joint health and preventing bleeds). You see, when we don’t treat regularly, we end up with damaged joints that can NEVER fully recover. Something is taken from you that you can’t regain! Something is PERMANANTLY removed from the health of your joints.

What does this mean in “real” life?  As I said earlier, I have four beautiful children! I have had two ankles fused and 6 surgeries to correct joint damage. As you can imagine, all of this was done during times of potential promotions at my job, during babies being born, during holidays, etc. At times, it has caused me to be limited in my activity and involvement in my children’s lives. I don’t share that as a sob story, only as a realization that life activities go on, whether you are able to or not. There are many things that I have wanted to do over the years that I have not been able to do, because of  limitations due to joint damage. Probably the most impacting, is not being able to wrestle with my kids the way I always dreamed of. This has taken a huge emotional toll on me directly. It has taken quite a bit of encouragement from loved ones and some professional counseling at times, to overcome.

I am a financial planner, as I said earlier, and many times people start off with a great plan in place. They know they would like to retire at 65. They start a plan when they are in their 30′s and start dreaming or imagining what they will do once they retire.  Most often, what happens between someones mid 30′s and their mid 50′s is amazing. They realize that the urgent took presidence over the important. They didn’t stick to the plan. They didn’t save a little along the way. They didn’t do what they COULD have when they had the opportunity.

I am concerned that during the transitional periods of patients taking treatment into their own hands, they stop treating prophylacticaly. Many of the kids in the community today grew up on some form of prophylactic treatment and as they are growing up, I believe it is imperative that we as a community continue to help them understand the reasons and benefits of keeping their joints healthy. I know of patients today who had perfectly healthy joints when they were young and are graduating college today with target joints. So when they are getting ready to start their careers or are getting married they are already having to deal with chronic bleeding.  In a time in their lives when they should be the most active, they simply have to slow down. This just doesn’t have to be this way.

Many HTC staff members promote prophylactic treatment as a way to help patients enjoy a relatively healthy and normal lifestyle.  Much like the financial planning example, though sometimes people start out with great intentions, then the urgent takes precedence over the important and it effects their lifestyle. If we are not careful we will have a community full of  “once upon a time” patients with stories of high school successes, and career failures.

I believe that the future is bright for our community. Easier treatments will evolve, but for the time being, Carpe Diem (Seize the day!) Set yourself or your child up for success. If they need encouragement or help, let someone in the community know. There are more and more of us that are older, that can act like big brothers and help them understand the importance of the little decisions along the way.  Help yourself, friends, children, patients understand the reasons behind infusing regularly. I believe that so many of the patients who are in transitional periods of life, stop infusing or following what they were told because as children they were told “you must treat regularly, rather than taught why they should infuse regularly. However, it is imperative as they grow older that we, as a community,  help them understand the “why” behind prophylaxis.

Hemophilia doesn't keep this "Ace" down

Fourteen year old Michael Schnitker is a boy on a mission, a boy with plenty of determination.  He is a boy who loves baseball, and doesn’t let his hemophilia keep him from playing the sport that he loves.   He does remember a time when he really wanted to play football, but soon learned that baseball was a much better sport for him.  He says, “I really got interested when I saw the Little League World Series on TV.”  He started playing T-ball at the ripe old age of 5 and has enjoyed many seasons since then.

Michael plays outfield and second base, and his favorite part of baseball is fielding.  He especially enjoys how good he feels about himself when he makes a good play.  He has attended hemophilia camp a couple of times, but for the last few years has opted to attend baseball camp instead, an option that seems to have paid off for him.  He just finished a successful season with the North Garland Indians and will be trying out for the high school team at Sachse High School in Sachse, Texas in the spring.

Many parents may be concerned about injuries from playing a sport such as baseball if you have hemophilia. However, infusing regularly via prophy allows Michael to live out his sport.  Michael reassures us that he has really had very few injuries.  “Not too many,” he says, “a few bruises, and one time I hurt my eye.”

Safe! Michael wears out the base pads for another hit

Michael is referring to an injury he had last year when he was playing second base and the third baseman threw a ball to him; the sun was in his eyes and since he couldn’t see, the ball hit him in the eye.  A trip to the ER and a few extra doses of factor and he was good as new.  Michael now wears sun glasses to protect his eyes, a good idea even if you don’t have hemophilia.

There is always the potential to get hurt, he says, but the benefits of baseball far outweigh the dangers.  I asked Michael what he thought he had gained from baseball and he said, “New friends, and I get to keep busy and out of trouble!”  As I talked to him I could also tell that he had gained confidence in himself, a kind of confidence that you just can’t find.  By Michael’s life experiences playing baseball, his self-confidence had grown.  If your child doesn’t like baseball, help them to find something that they are passionate about.   Their self-esteem will rise and they will feel like they really have a purpose in life, a purpose greater than their hemophilia.

Luckily infusing regularly before playing kept this injury from being life threatening

When I asked Michael what advice he would give to parents of kids who have hemophilia he said, “Don’t be too protective.  Let them try things, within limits of course.”  And his advice to kids with hemophilia who want to play baseball, or any other sport for that matter, “keep trying, even if you miss the ball – get ready for the next play!”  Michael Schnitker is learning good lessons in baseball, and good lessons for life!  Get ready for the next play!

On November 11, 2005 my 11 month old son was diagnosed with severe Hemophilia A. We began infusing him with factor VIII for bleeds. Within 4 months, we began to notice the factor was not healing him as quickly. It was around then that we found out about his inhibitor. After lengthy discussion with his doctors we made the decision to try to fight it off. Jeryn was so young that his best option was to place a port-a-cath in his chest for the daily infusions. He was to be given a very large dose of factor VIII every day, aka Immune Tolerance Induction, for as long as it took.

At this point, all we could do was be afraid for our son. We had, within a six month period, found out our son had a bleeding disorder, the medicine to control the bleeds did not work, and he would have to have surgery if he was to have any chance of beating it. Every doctor will assure you, and your family will console you but at the end of the day you will still be scared. That is ok, you have that right.

Over the next 3 years Jeryn would successfully fend off the inhibitor 4 times.  Each time it would come back without warning and stronger than it was previously.  It is currently August 2009 and his inhibitor level has been 0 since January.  From this point on every day brings the possibility that it may return but also the hope that it will not.

It is important to note that our doctor is one of the best in the world and he told us that if we did not beat it within 18 months the chances we would beat it at all were very low.  Forty-four months later my son is still fighting and still winning small battles.  Throughout this ordeal my wife and I have learned many valuable lessons, the most important being never give up, never quit!

In the beginning you will feel confused, scared, and fearful that you can’t handle having this placed in your hands.  The Bible says that God will never put more on you than you can handle.  You will learn that you have more nerve, ambition, and heart than you ever knew you had.  While it is truly sad that a child must bear this disorder, in the long run, he will be a better, stronger person for it.

With the start of school just around the corner, it is time for us parents of kids with hemophilia to begin planning our annual meeting with our child’s new teacher.  Back to school can be an intimidating time if you have a child with hemophilia.  It can be scary to be leaving your child, in the hands of someone who knows little to nothing about hemophilia, for most of the day.  However, if you, as a parent, go into the school with a positive attitude and useful information about your child’s bleeding disorder, the school staff members will tend to be quite receptive.

Remember that if you over react or seem overly protective, the school staff will probably treat your child in much the same manner.  No one wants to be treated differently, especially at school, so let the staff know the facts and if you remain calm and matter of fact about your child’s disorder, so will they.

It can be useful to put together a small binder with some basic hemophilia information in it and also some specific information about what to do if your son has a bleed or accident at school.  Gather information from the HTC or even on line and simply make copies of what you feel is most important for them to know.  Next, include information about your son, like who to call first in case of emergency, all of your contact information, his doctor’s phone numbers in case they can’t contact you and what kind of factor he uses.  Include any other pertinent information you feel may be helpful.  You can also call your HTC to get a copy of one of the many back to school kits put out by the factor manufacturers .

Each year, about this time, you can call to set up an appointment with his new teacher and any staff members who will be interacting with him on a regular basis.  Be patient, it seems like each year, there are a few weeks at the beginning of the year when you may get a lot of calls from the school saying your child hurt himself on the playground that may not be of a very serious nature.  The staff will get used to what is an emergency, and what is not, but you will always feel better knowing that the staff is informed and ready to deal with any accident or emergency with your son, should one arise.