Advancements of Approved Therapies For Bleeding Disorders

With cutting edge research and technologies creating ripples through the bleeding disorder communities, gene therapy offers not just hope to patients, but possibly a cure within the next 4 years. We discuss the new drug "Hemlibra" and ground breaking new genetic clinical trials with astounding results. CLICK HERE to join the live stream on February 28th, 1PM Eastern.

Live Stream Discussion on Hemophilia

I took a huge step today and live streamed an open discussion and Q&A session on a new platform @getvokl. I opened up and shared my journey, and offered words of encouragement for those viewing. Check out the live stream in the link below.

March is Bleeding Disorders Awareness Month

For over 30 years, the Hemophilia community has recognized March unofficially as "Bleeding Disorders Awareness Month." The name originally came from a 1986 Proclamation by President Ronald Regan, the impact and message as always been about bleeding disorders in general, and embracing the history from which the hemophilia community originates.

We've come a long way since the 70's when hemophilia treatments first began being used mainstream. The community has endured and suffered it's fair share of heartache and loss. Treatments today are improved vastly, and breakthrough treatments are in development as we speak to help the hemophilia community with our bleeding disorders.

Over the next 31 days, let's pause to reflect, taking a glimpse back, while straining forward and embracing new horizons in bleeding disorders. Reconnect with family members, share old photos and post on social to support someone you love with a bleeding disorder.

The follow list of things to do comes from the Hemophilia Federation of America.

• Change your Facebook and Twitter profile pictures to show your support. 
• Wear your bleeding disorder shirts or wristbands and share your photos on our wall to show support.
• Invite family and friends over to watch Bad Blood: A Cautionary Tale in an effort to educate about our community's history. 
• Explore the interactive historical timeline. 
• Print out educational cards for your kids to help raise awareness about hemophilia and von Willebrand Disease among their classmates. 
• Give a presentation to your child's school or to your colleagues about bleeding disorders. 
• Support your local Hemophilia Chapter, and help with fundraisers to promote bleeding disorder awareness. 

Day 2, Scheduled For Surgery

Joe and his wife Alexandra Christmas 2015

I hope everyone had a great Christmas this year, as I know I sure did. It was filled with laughter, fun, games and most importantly, family. God surely has blessed us in 2015.

On December 10th, I had a scheduled first time visit to a gastroenterologist in Tavares, FL. As some of you may recall from my last blog, I was visiting my family doctor for the referral needed to get up to this point for a specialist appointment.

The appointment on the 14th of December went great. I met Dr. Baskar of the Lake Gastroenterology Associates. The visit with him was short and sweet. He informed me I am a high risk patient, and in much need of a colonoscopy and endoscopy. Taking my hemophilia into account, Dr. Baskar has coordinated an effort with my hematologist a plan of action based on two possible outcomes. An extensive Factor VIII treatment regimen if polyps are found, and a lighter post-procedure regimen if no polyps are found.

Fact: Being HIV positive for over 30 years results in one being a high risk for colon cancer, (coupled with over 30 years exposure to hepatitis C and severe hemophiliain my case). My goal is rewrite the rule books based on colonoscopy screenings for HIV patients not from 40 years of age, but at 35. Many factors play a role in our increased risk, including long-term exposure to HIV antivirals, compromised immunity from exposure to HIV, and it's just the nature of living with the disease for over 20 years.

So the date has been set for January 7th, 2016 in Leesburg, FL. The hardest part of all this that I face is the drinking of the giant jug of electrolytes and no solid food diet. I'm not used to not eating at least something small prior to taking my morning HIV medication, so this should be interesting. Dr. Baskar has informed me that if polyps are found, they will be removed. This is a good thing, and now after months of waiting, we'll finally have a baseline procedure for a 36 year old hemophiliac with HIV, formerly cured of Hepatitis C.

Part of me is naturally nervous and anxious, but the other part is relieved that this procedure has finally been scheduled. I'll know once and for all the results, given my family history of colon cancer as previously stated. I will report back a couple days prior to the procedure to give everyone an update.

This is the final post of 2015, and I just wanted to thank the Hemophilia, HIV and Hepatitis C communities for all their support, warmth and encouragement the past year of blogging and advocating. My goal is simple, to live transparent, so hopefully you can be educated, well versed and ready to tackle any problem that may arise in your own life. As we close 2015, let's not only reflect on the blessed year we've had, but a new on the horizon. God Bless!

Factoring Up Will Never Be The Same

Today September 11th, 2015 is a date in which we not only pause to reflect on the tragic events 14 years ago in New York City and the Nation's Capitol, but strangely enough, a day of rejoicing within the bleeding disorders community. The FDA announced today that Roche's new drug ACE910 has been escalated to fast track status promising amazing results and a game changer among hemophiliacs suffering with Type A severe clotting disorders.

The new drug will be a breakthrough "subcutaneous injection" steering away from the traditional vein or port access among hemophiliacs today. The under the skin injection will be administered once a week among hemophiliac patients who have no inhibitors to factor VIII proteins. The first trials are expected to commence in early 2016 in young pediatric patients with Type A severe hemophilia. Control studies will be tested in both inhibitor resistant and non-inhibitor patients.

"Sandra Hornung, the chief medical officer at Roche, said that the FDA granted permission because they recognize that it meets a segment of the population that it hasn’t met before." PPPFocus.com

As a hemophiliac myself, having my veins accessed for the past 35 years, this new anti-hemophiliac factor VIII will be one to keep our eyes on. Though the nation may mourn the events of 14 years, members of the bleeding disorder community rejoice today in light of Roche's announcement of the new hemophilia drug.

Full Article: http://www.pppfocus.com/hemophilia-drug-given-fda-fast-track-designation-303295/

My Broken Foot & Hemophilia

Gotta say, I clean up pretty well for a wedding!

On August 4th, I attended a wedding as a groomsman, little did I know on this night, I literally would break a leg. Everything about the wedding was perfect; the ceremony, the food, the music, the couple and the church. Josh Moyerman is a dear friend of mine from Real Life Christian Church, and being asked to be part of his special day was truly an honor. I have to admit, I cleaned up pretty nice, and sported my Dapper look just for the wedding.

The ceremony was flawless, the reception was excellent and the music started as the celebration of marriage began. I knew my bones were fragile, though I truly didn't understand the severity of my own bone deficiency resulting from living with HIV over 30 years. My joints are damaged from hemophilia, but my bone density themselves are deficient due to progressed HIV disease. Long story short, HIV depletes the Vitamin D needed to restore bone health.

The hematoma from the fracture in ER.

I danced the "Macarena," rocked "The Twist," and everything seemed fine. Towards the end of the night, just as everyone was starting to depart, I get up to walk back to the men's changing room to get out of the tuxedo, when the unthinkable happened. I tripped, and fell, rolling my ankle, and in an effort to counter-balance my weight, then stumbled, which forced all of my weight to the center of my foot. I felt a pop. I knew something was wrong. The swelling happened instantly as a hemophiliac. It was a massive hematoma on the side of my left foot.

A friend helped me to my feet, and escorted me back to the men's changing room. I remember feeling a throbbing pain I've truly never felt before in my body, a break. Keep in mind, this wedding was an hour away from where I live, so I had to drive myself home to "double dose" on factor VIII and then go directly to the emergency room. My night had ended in ER lobby with a fractured left foot. Thankfully, it wasn't my right driving foot, that could have truly been a dilemma getting back home after the accident.

Avulsion fracture of the fifth metatarsal left foot. (actual X-ray)

My wife, a Registered Nurse herself, had one look at my foot and knew it was broken. And surely enough when the X-rays came back, it showed a fracture at the base of the fifth metatarsal. It's a pain unlike anything I've ever felt before. And to make matters worse, my left foot is my dominant leg, as I have a bad right knee stemming from hemophilia related joint injury. So now, my good foot is broken, and my bad right leg has to over compensate. Any weight bearing pressure or walking is completely and utterly out of the question. Not only was the top of my foot swollen severely, but the sole was swollen just as bad, which prohibited any kind of walking.

It's a nasty avulsion fracture, according to the doctor in the ER. He jokingly called it, "The Dancer's Break." Oddly enough, I was dancing hours before, but didn't break it in the way in which everyone assumed (dancing). But anyone that knows me, knows that I'm accident prone. I'm just a big klutz when it comes to stumbling over things, banging my elbows into walls, stubbing my toes on furniture. It's actually no shock that this would happen, and I say that with a smile jokingly.

My makeshift splint . 

After what seemed an eternity in the ER waiting room, it was finally time to splint up my foot. The pain medicine didn't even phase this level of trauma, and I remember being in excruciating pain as they attempted to makeshift a splint on my foot. I finally left the ER roughly around 2AM on the morning of August 5th, and never slept that night from tossing and turning in pain.

The next morning was my breaking point. With a combination of pain, and my Obamacare insurance not wanting to pay for me to see a specialist to get properly fitted for a boot or cast, I was scrambling to no avail to find a podiatry or orthopedic specialist to properly be evaluated. I admit, I broke down, and succumbed to the thought of defeat that I would be stuck in bed for the next 2-3 weeks, because CHA "Clear Health Alliance" healthcare could not find a doctor for me to see that was covered under their plan. For a normal person, this wouldn't be much of an issue, but for a hemophiliac, with bleeding in the joint and a verified fracture, it was a more heightened situation. Efforts are underway for me to change insurance plans over the next few months, and get away from CHA once and for all.

The day after, swelling turns to bruising. 

Thankfully, Hemophilia Foundation of Greater Florida stepped in, and recognized the emergent need and offered to pay out of pocket expenses to get me to the doctors I was intended to see. After a long grueling day on August 5th, by Thursday the 6th, I was seeing Dr. Amit Varma here in Clermont, FL - a specialist in orthopedic surgery at the Florida Sports Injury Institute.

As a hemophiliac, having a broken bone is more amplified because of the bleeding into the joint and surrounding tissue in which the break takes place. In my own situation, the swelling, bleeding was far more painful than the actual bone break itself. It took a solid 7 days to controlling the bleeding and keep the swelling down by dosing on Factor VIII.

After all is said and done, I'm healing nicely now that I have my padded boot to walk around in. I'm expected to no longer need the boot in 1-2 weeks, and the bone itself will be fully healed in 4-6 weeks. I have a follow up doctor's visit with my orthopedic surgeon next week on the 20th of August, and I will find out how well my foot is healing. Prayers for healing and recovery are warming welcomed.

A Video Testimony

Joseph is not only a survivor of the horrors during the dark days of the pharmaceutical industry, but a living miracle by medical standards. Born with severe Hemophilia Type A (less than 1% clotting factor in the bloodstream), the very product used to treat the blood disease (Anti-Hemophiliac Factor VIII) to many became a death sentence in the late 80’s and early 90’s. Plasma pools were riddled with live HIV and Hepatitis C strains from skid-row and prison locations. As a result, Joseph became co-infected (both HIV & HCV) around age 3, trailing a life of extended hospital stays, appointments and never-ending infusions sessions. Today, less than 1.8% of the 12,000 hemophiliacs in the United States are alive. Joseph is one of those fortunate warriors to carry the torch and be that voice for those who no are no longer with us. In 2014, Joseph underwent extensive liver treatment on the new drug called Sovaldi, and within four weeks of a six month therapy, his Hepatitis C virus was no more. Today, Joseph shares his life, struggles and realities of living with debilitating complications resulting from hemophilia related injuries, and maintains a healthy lifestyle with a well controlled HIV anti-viral suppression regimen. He is unique, unfiltered and a survivor; and it's for that reason God is using his life in a major way.

The Cold Stare - Chronic Pain From Hemophilia

I am going to open up about something very few know about. Only my parents, wife and a small handful of close friends have seen the real “Joe Burke.”

There is a generation of hemophiliacs alive today who are modern day anomalies of science, and the fact some of us are still alive and well remains nothing short of a miracle. This era of hemophilia born individuals has not only suffered through the era of the AIDS epidemic of the 1980′s and 90′s, but are now facing challenges even more serious with age.

Being a co-infected hemophiliac myself, which means having both HIV and Hepatitis C from contaminated blood products of the early 80′s, I am now facing a giant even more towering than HIV, AIDS or HCV: chronic pain.

Long before today’s standard of prophylactic treatment to prevent joint bleeds in hemophiliacs, patients were given factor VIII infusions on an “as needed” basis. Which means, when a joint bleed occurs, we didn't have preventative measures to stop the episodes. Until my move to Florida in 2009, I was never placed on prophylactic therapy to treat hemophilia due to its cost; often times a bill of $25,000 a month for factor VIII injections and supplies.

Often times the bleeds would stop after a couple doses of factor VIII, but more often than not, many would require more than just 2 dosages to control the bleed. Not only did this style of “as needed” treatment result in severe joint damage, but permanent joint immobility and function.

The pictures to the right show my own body and the damage done to it over the past 30 years. Pictured is my right knee, which is severely and permanently enlarged, my right elbow, right ankle and what a small bruise to a normal person would look like on a hemophiliac.

Not only over time do the joints lose mobility, but managing the pain of something as simple as standing in a shower can be extremely difficult.

Where am I going with this? I was reading a column in National Pain Report recently about a young lady who suffered from muscular dystrophy, rheumatoid arthritis, scleroderma, mixed connective tissue disease and other auto immune related disorders.

Her story of being humiliated by her pharmacist in her hometown echoed many horrors I've experienced personally in requesting proper medications to treat hemophilia related episodes and pain.

Every time I visit my doctor that treats my hemophilia, it gets to the point in the visit where I must bring up the refill of my pain medication. I can’t help but feel somewhat humiliated. Not by the fact I’m asking for pain medication, but that in my asking, I’m being compared to those who abuse the system fraudulently.

I've been okay with my Hemophilia Treatment Center in asking for pain medication and receiving it — although the stigma is still there. But when I ask my pharmacist to fill the prescription, I’m often greeted with a cold stare and told, “We are all out, you’ll have to come back later.”

The cold stare translates into anger in me. And the anger manifests into resentment towards those who abuse the pharmaceutical system to get “a fix.” As a Christian man, I must love everyone, but the drug seekers are making it extremely difficult for those who truly need the medications, thus testing my patience on a daily basis. The Apostle Paul wrote about thorns in the side, and this is a big thorn for me.

Let me be real for a second. There are moments, as a man with severe hemophilia, that something as simple as showering can be excruciating. It’s hard for me to stand in front of a toilet to go #1. I can’t physically reach my back when I shower and often ask my wife to assist. Getting out of bed is a 20-30 minute daily routine for me of just standing at my dresser while holding on so my ankles, knees and hips get used to my weight. And I don’t weigh much at all, just 170 lbs.

I hate the feeling I get as the prescription leaves my hands into the pharmacist’s, and that moment when he reads the script and then the glance upward at me. It’s always degrading to some extent. Automatically, I’m considered “One of Those” types. It’s humiliating that I have to feel this way when all I want is a way to at least relieve some of the pain caused by a hemophilia related injury and permanent joint damage.

When an occurring bleed is happening, not only do we have to rest the joint and pack it with ice, but often times I’m awake all hours of the night without sleep due to sheer pain. Things like muscle creams, joint gels, icy hot etc. don’t even phase a hemophiliac. We bleed internally in the joint.

To all my blood brothers and sisters out there who are the older generation of hemophiliacs with pain and permanent joint damage, we must continue to fight and hold our heads high. We have a medical condition that causes lifetime pain and stress, and we must never feel humiliated or dismayed when asking for help to manage our pain.

Usually it only takes a moment for a pharmacist to see the damage to our bodies and the look on a worried patient’s face. Then they realize that we’re not junkies, we’re not scammers, and we’re not a threat. We are just a hemophiliac who needs help.

They have been conditioned by the DEA to think “druggie.” They are scared. They can lose their job, their career, their assets and their freedom if they make one small mistake. The paperwork, the time and the risk are just not worth it.

The misguided, insensitive and inhumane policies of our government, and the DEA in particular, have led us to create a Facebook page called Patients United for DEA Reform. It’s for people like hemophiliacs who need a voice and the support of family, friends and community. People living with pain and chronic illness.

You can learn more about Hemophilia by watching this video: