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!

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

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.

Kelsey Matthews arrives!

Our Sweetaffliction.com co-founder Andy Matthews and his wife Patti had a big surprise on Tuesday August 4, 2008. To everyone’s surprise their new baby Kelsey decided to make her appearance at 12:20 pm. She weighed 3 pounds 12 ounces and is 15 inches long!

Patti went in for a normal sonogram that morning and the doctor did not like something about it. After some monitoring it was determined that something was abnormal with the uterus causing Kelsey’s heart rate to drop occasionally. They decided to do an emergency C Section at 32 weeks and literally, just a couple of hours later, Andy and Patti had a brand new baby girl!

Patti is resting and hanging in there despite everything. Kelsey is having some complications as many premature babies tend to have but is a strong, spunky fighter and we all know that God will be watching over her. Please pray for Kelsey and  The Matthews family as they struggle to navigate through this stressful time while both Kelsey and Patti recover.

POSTED BY DAVID

I had my knee replacement over 10 years ago at the age of 32 – one year after getting married. I found myself waking up in the middle of the night with my left knee literally locked up and in severe pain. Unable to straighten the knee out without experiencing agonizing discomfort, I would have to gently move the knee around in different positions until the bones would disconnect from each other.

When you have a bone on bone situation in a knee joint, all kinds of hell can break lose. For some reason my hell always happened at night. However, for the most part during the day I was still able to get around relatively pain free. Most importantly I still had around 110 degrees range of motion. Just enough to sit comfortably in a sports arena, go on a roller coaster, and ride a bike – a form of physical fitness that I could still enjoy despite my pain.

After getting x-rays the doctor proclaimed that because I basically had no cartilage, the only viable solution for me was a total knee replacement. I never got a second opinion or tried to come up with a different solution to solve the locking  problem. Nor did I attempt any kind of physical fitness for strengthening the joint. I am convinced to this day that had I gone on prophy and really worked out hard, I may have gone another several years or longer without having to do the replacement.

I had my replacement and never did experience any bleeding problems as a result of the surgery. What I did have,  and what I am warning those of you thinking of doing this procedure,  was a very conservative post-op hemophilia physical therapist.  Hemophilia nation – when you are dosed up with 100% clotting levels – enough to have your bones sawed on and leg cut completely open – the last thing you need is a hemophilia physical therapist who is treating you like you might still bleed.

I was put on a passive range of motion machine that only moved my knee several degrees slowly – instead of bending the heck out of it like most post op therapists tend to do. Nor was I put on a normal, aggressive post-op physical fitness program at home like most knee replacement patients are. My therapists and doctor all took the “let’s take it very easy and slowly with this hemophilia patient” approach.

Weeks later, I ended up with a lowly 60 degrees range of motion. 50% less than what I had going into the surgery. As a result, one month post-op I had to have a manipulation – a procedure where they give you an epidural and literally bend your knee all the way down to break apart the scar tissue.  However, by that time my knee joint had built up so much scar tissue that the damage was already done.

Today I have about 85 degrees range of motion on a good day. My leg muscles are extremely atrophied because I am unable to do much in the way of physical fitness and the scar tissue around my knee causes pain around the joint capsule and into my quad muscles including occasional bleeding and swelling in my quads.  I haven’t been able to ride a bike since the surgery and I will soon need to move into the handicap section of the arena where I watch my beloved Utah Jazz basketball games because I can no longer sit in my seat comfortably and bend my leg. Nor can I bend my knee enough to do things like ride a roller coaster. But hey, the dang thing doesn’t lock up anymore at night! You gotta love that!

So if you have hemophilia and are contemplating getting a knee replacement get a few opinions first. Wait as long as you can possibly deal with the pain comfortably. If you can afford prophy and that makes things better then by all means do prophy. Work out! Strengthen your muscles. Then once it is time for that replacement, make sure your doctor and post-op team are ready to push you as hard as they would push a normal patient. Factor up for several weeks and make sure you have a solid factor prescription/dosage schedule. Remind them to take those kid gloves off when you are doped up on factor! I’m pretty sure if you do these things then you will have a positive experience like David Simmons did and not like the ones our reader Greg and I had. These are all just personal opinions of mine and are by no means proven facts.

Written by David

Texas Rangers Pitcher C.J. Wilson

Sweet Affliction would like to send a special shout out and thank you to Texas Rangers pitcher C.J. Wilson who recently held a Guitar Hero charity event with proceeds going to a Texas Hemophilia Camp. Apparently C.J. has taken an interest in Hemophilia and is doing his part to help in the community along with other charities who benefit from C.J. Wilson Children’s Charities.