The HTCs and HoG are staffed with excellent doctors and support personnel and I thank all of them for their dedicated work helping people like me. I met Cathy Dowis for the first time during an annual visit to the Emory HTC where the usual blood work and questions took place, all in all a routine visit. A few weeks later I received a devastating call from Cathy. She told me that my blood work showed elevated liver enzymes indicating Hepatitis C. My first response was "What? Hepa.Hep" I could barely get the words out. I felt nauseous and shocked. Later I felt angry.angry at contracting something normally associated with (from the general public's mind) unsafe behavior.

I inherited von Willebrand Disease and during my childhood I suffered miserably from nosebleeds which required regular trips to the hospital for Factor VIII infusions. The hospital was like a second home to me for many years. During one particularly bad episode, I bled for over 8 hours and by the time I was treated, I had lost so much blood that I needed a blood transfusion. This was in the 80’s; before anyone knew to screen for Hepatitis C.

Cathy was empathetic and patient with me on the phone as I regained enough composure to be able to ask questions like "What exactly is that?" and "If it was most likely from a childhood blood transfusion, how on earth has this been undetected for so many years?" Cathy directed me to go to Emory and meet with a specialist. I went online read about Hep C and the treatments and chose to be in denial for the next few years.

A few years later during another annual visit to the HTC, I met Francie Lasseter who usually worked at Emory Crawford-Long, but happened to be there that day. She asked if I had considered treatment for the Hep C. I had read about several treatments, but had no interest in them due to horrific side effects. Francie explained that there was a newer "Pegylated" version of Interferon that had been successful with fewer and less dramatic side effects. She suggested that there would be no harm in at least talking to a Hepatologist. I concurred; what would be the harm?

A few weeks later I went to Emory Crawford-Long's "Infectious Disease Clinic" -- the name needs some marketing geniuses to spruce it up and make it sound more welcoming. This is where I met Dr. Melissa Osborn. Dr. Osborn is a great soul; she is both compassionate and respectful. After further tests she confirmed that I had Hepatitis C, but *thankfully* the type that responds well to treatment. We discussed what "treatment" involved and I agreed to consider it.

For the next week I dedicated hours of time searching on the Internet for other people's experiences with Pegasys and Ribavirin. The results from my search varied from "horrible" to "downright nightmarish" with stories of people too fatigued to work, too nauseous to eat and just too sick from the treatment to live their lives. While I'm not the type to be easily influenced, the fact that I had found nothing positive certainly made me think that the treatment was worse than the disease. Hep C "might" kill me, but treatment "would" make me very sick.

I conveyed my fears to Dr. Osborn during a follow up visit and we came to an agreement. I would try treatment and should the side-effects impact my quality of life to the point where I could not work or if I became otherwise miserable, we would simply stop. There was nothing to lose; I'd be technically no worse off than before starting treatment.

So my treatment plan was Pegasys and Ribavirin for the next six months with regular blood monitoring.

You'd think if you can give yourself an IV that a little subcutaneous injection would be easy, but I trembled that first time and ended up sticking myself about five times. By injection number three it was no big deal. The first night after the first shot of Pegasys I felt a bit feverish--but to be candid, I'm not sure if that was self-induced from the worry of how my body might react. By shot number three I had no side effects.

The Ribavirin pills didn't make me feel sick as long as I took them after eating some type of carbohydrate. On an empty stomach one pill was enough to make me feel as though I'd been kicked in the stomach, a feeling that that lasted several hours. You only make that mistake once or twice! Drinking lots of water was important for keeping any nausea at bay.

The sub-q shots left me with small bruises so I had to rotate them around my abdomen. At one point the bruises were taking so long to heal that I thought I'd be left with polka dots--they took a few months post-treatment to clear up, but they did, every single one.

As for the other hair-raising side-effects I read online that deterred me from treatment for so long.I can honestly say that my personal response didn't even come close to the horrors that I read about. I didn't feel fatigued; in fact I continued to hike regularly--sometimes 10 miles at a time! I didn't lose any weight, become depressed or have reason to stop working or socializing. I did however, lose a couple of extra strands of hair every day--it wasn't noticeable to anyone else but me.

The routine blood tests were uneventful, I got used to seeing the same technician and after a couple of visits she remembered to use a butterfly instead of a straight-stick for drawing blood. It was nice getting the results and seeing the numbers go down. Beating the virus is a wonderful feeling.

The biggest issue that I experienced was not one that others had written about, so it may be isolated to the type of VWD I have or just pure coincidence. As an adult I would have one nosebleed every few years. While I was on treatment the frequency increased to about one per month. Thanks to HoG and the client assistance program this was not as disruptive as it could have been. Post-treatment the nosebleeds ceased and I've been fine for years!

I suggest that anyone considering treatment conduct their own research and become comfortable with their own decision, whatever that might be. However, also consider your sources: the majority of blogs and websites I found were written by people that may have been involved in high risk behavior which in itself would take a toll on the body. I'm not a medical expert at all, that is simply my observation.

The intent of writing this piece is not to provide pseudo-medical advice, hence the deliberate omission of PCR viral loads and other test results; the intent was to communicate, from one member of the bleeding community to another, my personal experience with beating Hepatitis C. I have not been asked by anyone from HoG or Emory to write this. The words, the sentiments, are all mine.

I wish you the best and hope you have a healthy, happy and fulfilled life. Thanks Cathy Dowis for your many, many years of service. Thanks to Francie Lasseter for putting the bug in my ear that saved my liver, and perhaps my life. Thanks to Dr. Osborn for your candor, compassion and for being as much as a friend as a doctor.

Thank you to HoG and all the staff at the HTC for everything that you do. You do help us to live "normal" lives.

Being a spouse of someone with hemophilia has introduced me to a community filled with amazing people. As I learn about their stories and how HoG has enriched all our lives, I am humbled and more determined to be a part of something so special and important.  My first major volunteer job was as a counselor at Camp Wannaklot and 2012 will be my fourth year in this role.  It's always one of the best weeks of my year, because I get to meet kids who just want to have fun and leave their labels behind.  As someone who grew up with a severe visual impairment, I can sure identify and I try to pass along lessons imparted to me so many years ago. The love comes back to me in smiles and hugs from former campers.

2012 marks my 10th year volunteering for HoG and will include speaking with state and national legislators about the needs of the community and serving on planning committees for both the Hit 'Em For Hemophilia Golf Tournament and the Trot To Clot Hemophilia Walk and Run.  I will also be returning as a counselor for Camp Wannaklot, which is always one of the most rewarding weeks of my year.  The campers always come with eagerness and spirit and we get to shepherd them through their journey towards understanding and overcoming their unique challenges with lots of adventures and laughs along the way.  I have also worked with Family Camp, which has given us the chance to connect with other families to swap stories, strategies and heartfelt empathy.

I was elated to learn that the 2012 Trot to Clot will help fund Camp Wannaklot and that is a winning combination!  Clients and supporters of HoG can form teams to raise awareness about bleeding disorders in their communities and have the added bonus of raising funds for camp!  The Trot to Clot is an excellent way for clients like my family to give back some of what HoG has blessed us with and we hope to see that same spirit and enthusiasm at Stone Mountain this May.

If you would like to run or walk, you can get all the details about registering for the Trot to Clot Walk and Run at www.hog.org/trot. 

And, there is still time to volunteer as a counselor for Camp Wannaklot.  As I said, camp is one of the most rewarding weeks of my year.  To find out more about what camp volunteers do, please visit www.hog.org/camp or call Kim at the HoG office. 

By Karen Geney, VP Human Resources

What would you buy with an extra $1000?  That’s the grand prize in the Tobacco—I’m Not Buying It video contest introduced March 8 by the U.S. Surgeon General's Office and the Centers for Disease Control and Prevention (CDC) Office on Smoking and Health.

Dr. Regina Benjamin, the U.S. Surgeon General, released a report called Preventing Tobacco Use Among Youth and Young Adults. This report details the scope, health consequences and influences that lead to youth tobacco use and proven strategies that prevent its use.  Read more about the report in this press release.

The Video Contest was designed to engage youth and young adults in developing original videos that feature one or more of the report’s findings.  Young people need to hear from other young people about tobacco and why they aren't "buying it." 

More than 3.5 million people under the age of 18 smoke cigarettes.  That's right, 3.5 million—600,000 middle school students and 3,000,000 high school students who smoke.  This is very disturbing since tobacco is the leading cause of preventable and premature death, killing more than 1,200 Americans every day.  After years of steady decline, use of tobacco products by youth and young adults shows signs of increasing.

According to the report, "Expenditures for marketing and promotion of tobacco products exceed $1 million an hour – over $27 million a day – in the United States alone. Targeted messages and images that portray smoking as an acceptable, appealing activity for young people are widespread, and advertising for tobacco products is prominent in retail stores and online."

There are two age categories for the video contest.  The first is for students age 13-17 and the other is for adults age 18 to 25.  There are two language categories, English and Spanish, in each age category. There is a $1,000 grand prize in each category ($4,000 total) and three $500 prizes in each category ($6,000 total).

The videos must be 120 seconds or less in length.  April 20 is the deadline for submitting a video and winners will be announced by the end of May.  This is your chance to talk to your classmates and friends about why they shouldn't smoke AND perhaps even win a prize for doing so! To get all the submission requirements and additional information about creating your own prize-winning video, please visit www.challenge.gov.  And, if you do enter the contest, please let HoG know! We’d love to see your video.

I have learned that it takes practice to talk about dying with dignity, particularly when you have five minutes during one of Hemophilia of Georgia’s statewide family dinners. I mean, seriously. I’m supposed to talk about death and dying issues right after our clients and their families have enjoyed a nice buffet? For a fleeting moment that is what went through my mind when it was decided that family dinners are as a good a time as any to talk “advanced directives.” These directives tell your family and doctors how you want to be treated when you can’t speak for yourself.

Because this subject is all about putting more power back into the hands of clients, I forged ahead and got over my awkwardness. I’m glad that I did. After all, I felt tremendous relief when I finished my own directives years ago. Still, it is never easy to talk about death, particularly to a crowd mixed with young adults and families with children. But during a recent HoG dinner in northwest Georgia I knew that I had done something right when all of the Five Wishes® forms on the table were taken by the end of the dinner.

One father in his mid-thirties joked with me as he picked up a form. “I don’t want my wife playing Justin Bieber songs to me when I’m in a coma and can’t defend myself!” It was funny but true. It is important to make these things clear if you want your last days to be as peaceful and respectful as possible. The term “advanced directives” sounds dry but it is a document that is meant to give you as much control as possible by helping you plan important things in advance. Among other things the directives tell your doctors and loved ones what you want done for you medically – and what you do not want done – at the end of your life. It also spells out what types of music, light massage, readings, aroma therapy and other comforting interventions might bring you more peace during your last days.

Unfortunately, young adults can find themselves in this situation, too. Hospital staff and those doing out-patient surgeries are required to ask anyone age 18 or older if they have completed advanced directives.

Recently I sat with a mother and her 18-year-old son as they expressed their anxiety and shock about this question being raised prior to a routine surgery for the teen. It is a question that is meant to convey respect to the young person by treating him as an adult who has a right to make his own decisions. But the topic can create fear if family members have never discussed it and if they interpret it as a prediction about how the procedure will go.

That is another reason why I decided to write this blog. Whether you are 18 or 98, the best time to fill out advanced directives forms is when you are calm, in comfortable surroundings and have time to consider your options. The user friendly Five Wishes® form is now available online at www.fivewishes.org. The online forms can be e-mailed to doctors. Its primary author, a lawyer named Jim Towey, worked closely with Mother Teresa of Calcutta for 12 years and was influenced by her emphasis on death with dignity. For a legal document, Five Wishes®  is unusually easy to understand. HoG nurses and social workers can help clients get free copies of Five Wishes® forms.

You can search online to find other advanced directives if you would like. But I like this particular form, which is $5 per person or less for big orders, because it is so easy to read and includes a wallet card that directs medical staff to the person you have designated as your healthcare agent. Once it is signed and witnessed according to instructions, it is legally binding in Georgia and most other states. However, it never hurts to hire a lawyer specializing in these issues to discuss topics related to your care. The laws about nursing home funding and financial assets are extremely complex. An experienced lawyer can help you navigate them.

So what are the five wishes covered by this form?

Wish One: The person I want to make care decisions for me when I can't.
Wish Two: The kind of medical treatment that I want or don't want.
Wish Three: How comfortable I want to be.
Wish Four: How I want people to treat me.
Wish Five: What I want loved ones to know.

Five Wishes® is a trademark of Aging with Dignity. All rights reserved. © 2007 Aging with Dignity. PO Box 1661, Tallahassee, Florida 32302-1661

By Jeff Cornett, Director of Training, Research, and Advocacy

I inherited The Hemophilia Handbook.  When I began working with Hemophilia of Georgia (HoG) in 1990, The Handbook was two years old and already very successful.  My boss, Ruth Brown, was the author.  She wrote the handbook while she was finishing her Master of Public Health degree at Emory University.  One of her professors had been contacted by Karen Meredith at HoG.  Karen saw the need for a comprehensive resource manual – a “handbook” – for families affected by hemophilia.  She secured grant funding from the Georgia Health Foundation, hired Ruth as the writer, and assembled an Advisory Committee of people with hemophilia and their health care providers.  A young art student, Wade Von Grawbadger, was hired to do the illustrations. (Wade has gone on to have an award-winning career as a comic book artist.)  In 1988, the first edition of The Hemophilia Handbook was published.  In a large three-ring binder with colored tabs for each chapter, it weighed almost five pounds.

The grant from the Georgia Health Foundation provided a free copy of  The Handbook to every family in Georgia with hemophilia.  The Georgia families told their relatives about this great new publication and soon HoG started getting requests for handbooks from all over the country, then from all over the world.  Printing and shipping a five-pound book was expensive.  HoG tried to keep the cost down so it would be affordable to consumers.  We found creative ways to get copies overseas.  In 1990, instead of shipping books, we granted reproduction rights to the Haemophilia Foundation of Australia so they could print and distribute handbooks to their families.  We couldn’t get a handbook to everyone in the world who requested one and that was an on-going frustration.

By 1990, The Handbook was already in need of an update.  In the beginning, we had the fantasy that we would send replacement pages to everyone who had ordered a handbook.  We actually attempted this.  When we reached 2,500 handbooks shipped to 35 states and 5 foreign countries, it was obvious that system was not going to work.  I was assigned editing responsibilities for a new edition.  The biggest complication was that HoG did not have a digital copy of the handbook.  All edits (and the index!) had to be done by hand.  The sections on hepatitis and AIDS were completely rewritten.  We included information about a new hope for a cure – a procedure called “gene therapy” – and a new product called recombinant factor VIII.  We added a woefully inadequate two pages on von Willebrand Disease.  We were able to tell people about new protections under the Americans with Disabilities Act.  We put in factor dosage tables that were soon photocopied and taped to the walls of most hemophilia treatment centers.  We updated the immunization recommendations for children – the part of the handbook that was guaranteed to be out-of-date as soon as it came back from the printer.

It was six years before the third edition of The Hemophilia Handbook was printed.  We used that time to make some major changes.  We finally had a digital copy – the result of me re-typing all of the text and scanning the drawings.  By switching from a three-ring binder to a spiral bound book, we were able to drop the weight to just over two pounds.  Thanks to another grant from the Georgia Health Foundation, we were able to keep the price the same as the 1992 edition.  New content was added, including immune tolerance, Creutzfeldt-Jakob Disease, and Internet resources.  The biggest changes came from making the handbook easier to read.  We followed the best practices of health communication and lowered the reading level and added many more graphics.  I was very proud of the 1998 edition.

Even though having a digital copy of The Handbook made changes easier to make, we continued to struggle to keep the handbook comprehensive and up-to-date.  The information was only current as of the publication date.  We had to avoid information (like immunization tables) that was likely to change soon.  We also committed to a big project:  making the next edition of The Handbook available in both English and Spanish.  We achieved this goal in 2002 with the publication of La Guía de Hemofilia.  A bit of trivia:  because Spanish generally requires more words than English to communicate the same idea, La Guía is 32 pages longer than the same edition in English.

After publishing the 2002 editions of The Hemophilia Handbook and La Guía de Hemofilia, we turned our attention to printing a resource just for people with von Willebrand Disease and inherited platelet disorders.  I don’t think I realized how difficult this undertaking would be when we began.  Compared to hemophilia, VWD and platelet disorders are very complicated.  Just deciding which platelet disorders to include and which ones to leave out took much thought.  My guilt over excluding Montreal Platelet Syndrome was relieved several years later when researchers decided it was a sub-mutation of type 2B von Willebrand Disease.  In 2007, we published The VWD & Platelet Disorder Handbook.  I decided that it would be our last printed handbook.

This decision was not difficult.  When people needed medication information, they no longer went to their bookshelf.  They went to the Internet.  Making our handbooks an online resource solved so many problems.  We could make changes to the text instantly.  The Handbook could be comprehensive again.  We could provide hyperlinks to other websites for further information.  We could use color photographs instead of line drawings.  The Handbook could be free to anyone, anywhere in the world who had access to the Internet.  Our readers could give us instant feedback and ask questions.  These features became real when the first respondent to the online handbook, a woman in Malaysia, asked for updates on the latest hemophilia treatments and more information for carriers. 

We are excited about launching this new venture.  All of us who have been involved with the handbooks over the years have found the work to be very rewarding.  Parents of children with bleeding disorders have told us many times how important the handbooks are to them in learning to cope with all of the demands of a chronic condition.  We want to continue to fill that need.  Let us know how we can make The Handbook better.  We promise you won’t have to wait years to see your suggestion make it to print!

I am being challenged to go paperless; to scan documents, lose the paper calendar, makes notes on an iPad.  Have you tried to hand someone a check recently?  Last Sunday I gave my nephew a check for his birthday and he looked at me as if to say, “What is this?”  And then, there was my annual trip to the optometrist.   I had my pen in hand, ready to fill out form after form.  To my surprise, the paper forms had disappeared!  None!    Zero!  My eye doctor had gone paperless.  

Unfortunately, Hemophilia of Georgia is not there yet!  We’re working on it but have a long way to go.  When it comes to “forms” we have plenty of them.  If you are one of our pharmacy clients, you know exactly what I am talking about!  I am sorry.  We are all sorry.  If we had a magic wand, we would make many of the forms we ask you to complete disappear – Poof!  Gone!

A year ago, the HoG pharmacies added the now infamous Order Summary Form.  All of a sudden, you open your box from our pharmacy and low and behold … drum roll … a new form!  Just what you’ve been hoping for!  This form is special, really special.  It comes with its own stamped, self-addressed envelope.  And, have you noticed the colorful highlights?  Check it out next time you get your order.  Oh, please don’t just check it out.  Sign it  and return it right away!

I am a long way from going paperless, but I am headed in that direction.  Hemophilia of Georgia is leading the way and hopefully it won’t be too long before we can cut down on the number of forms we ask you to fill out.  Meanwhile, please hang in there with us and return the signed Order Summary Forms immediately.  This helps us comply with several state laws and keeps your factor orders coming!

By Gelene Doolittle, RN, Outreach Nurse

Living far away from a Hemophilia Treatment Center (HTC) presents many problems.  Among these is distance to travel.  This can result in more than one day lost from school or work and extra expenses for gas and hotel .  We won’t even mention having to drive in Atlanta when you come from a town where "rush hour" lasts 10 minutes! 

The good news is for the most part you only have to go to your HTC once a year for a checkup.  Phone calls in between to your HTC nurse is also a good idea.  If you attend your HTC appointments regularly many situations can be handled with a phone call. 

One very important piece of advice is to have a local physician who is familiar with your hemophilia.  Your HoG nurse will be happy to provide an in-service and any other information they need.  You can help pave the way by telling your doctor about us and asking him to let us provide an in-service. 

Little steps like these can make your journey with a bleeding disorder much smoother.  Unfortunately there is nothing that can be done about the traffic in Atlanta!

From September to December I get a lot of calls about insurance open enrollment, which is the time you can make changes to the insurance you choose from the plans offered by your employer.  For most people this is a mundane yearly task that they have to go through.  For people with a chronic condition it is a critical task that takes a lot of preparation and detective work.

In my last newsletter article I gave some hints about the questions to ask when you are faced with an open enrollment choice.  For one family those hints were not enough.  They have a self-funded insurance plan which means the employer pays the claims but uses an insurance company to manage the plan.  This also means that the employer has   control of the plan design and can make decisions regarding coverage that they think will work best.  This family was able to get a meeting with representatives of their employer as well as the insurance company they were considering.  Even though the family was well prepared and had done their homework they asked me to come in case there was a problem.

The first person we met with clearly explained the plan, out of pocket expenses and general coverage.  This is typical of most open enrollment contractors or HR staff.  He was sincere and helpful but did not have the answer to this family’s big questions: Where is our son's factor covered and can we continue to use the HoG pharmacy?

Our second meeting was with a head HR representative, a salesperson from the insurance company, and a salesperson from the specialty pharmacy selected by the employer.  There we got our answer.  The factor was not covered under medical but was covered by the drug benefit.  The employer elected to have all specialty medications run through the drug card company's specialty pharmacy.  This meant the family had to decide whether to select this plan  and use a new specialty pharmacy or to stay with the insurance plan they already had which does not require them to use a specialty pharmacy. 

Ultimately, they chose to keep the plan they had so they could continue to use the HoG pharmacy, which has been very helpful to them for many years.   Had it not been for all of their persistence and detective work they would not have known they had a choice to make and would have been forced to change to a specialty pharmacy chosen by the insurance company.

The decision you make should be based on your family's individual needs.  In order to have a choice you need to get all of the information first.  Ask questions about the coverage, limitations and networks you will have access to with each plan.  And don't stop f the first person you speak to doesn't know the answers.  Keep asking until you are satisfied that you have enough information to make the best decision for your family.

The phone rings.  There’s a power outage on Roswell Road.  Is the generator running?  Are all the refrigerator temperatures in range?  Do we need to go to the pharmacy and check on the factor?  It’s 10:30 p.m.

Factor can’t get too hot or too cold.  Several years ago, we had a low tech solution to monitor the factor stock when the office was closed.   A suspected refrigerator failure or area power loss usually involved a drive to the pharmacy to check on the refrigerators.  But all that has changed and now we can be confident that our clients’ medication is safe and sound while we sleep or enjoy a long holiday weekend.

Each pharmacy refrigerator has been upgraded for precise temperature control and monitoring.  A digital thermostat replaced the factory installed units and two digital thermometers help us keep an eye on the temperature.

Then there’s the security company.  Each refrigerator is wired with a temperature monitor and a panel that records the temperatures.  If the temperature rises or falls outside of a preset range, an alarm goes off and alerts the pharmacy and the security company, 24 hours a day, 7 days a week.  If the pharmacy is not staffed, the security company calls a list of emergency contacts, alerting us of a potential problem.

Oh, and I must not forget to tell you about the backup power generator!  It sits right outside my office.  It is programmed to run a “test” every Wednesday morning at 10:00.  If you call me then, you’ll hear it, loud and clear.  It is sweet music to my ears – an assurance that when we have a power outage (and for reasons unbeknownst to me we have lots of power outages in our area), the factor will stay nice and cool!

Thank goodness for technology.  Now, when it’s 10:30 at night and the phone rings it seldom results in a trip to Roswell Road.

By Danny Moore, RN, Outreach Nurse

It’s a stressful thing, being responsible for someone with a chronic medical condition.  It’s even more stressful when you have no idea what that condition is or how to treat it.

As a nurse, I’ve received tons of calls from my wife and her fellow teachers asking about information on everything from asthma to seizures.  They’d get a new student with a chronic condition, and would be given no information on what to do in case of an emergency.  I can only guess what their imaginations are conjuring up when they hear some of these diagnoses, but I have a pretty good clue what their first thoughts are when they hear the words “bleeding disorder.”  There are so many examples, both in print and on TV, of reporters quoting “all they need is a paper cut.”  To those of us that deal with bleeding disorders on a daily basis this is absurd. Nevertheless, the inaccuracy has made its way into society.  We not only need to correct this misinformation, but we also need to calm the fears of those responsible for our children. 

It is possible for someone to go on the internet and learn the basic information about a bleeding disorder, but everybody bleeds differently.  It’s so important to help a teacher/coach/school nurse know what to look for specifically for each individual.  It’s also important to know the signs of life-threatening issues and what to do in those cases.  That’s where your HoG nurse can help.  We all have experience with bleeding disorders, as well as other chronic conditions.  We can help the school staff to know what to do in case of a bleeding event, how to recognize bleeds, when to call the parent and when to call 911.  We also want to let them know about any other conditions affecting the child, so be sure to let your HoG nurse know.  When the teachers and coaches feel more comfortable, it opens new avenues of learning and creates a much better learning environment. 

I have personally given school in-services where the coaches were too scared to let the student participate in PE.  The last thing we want is for our children to feel punished just because they have a bleeding disorder.  There are only a few things that they can’t do.  With a little education, we can help everyone realize just how much they CAN do.

One of my responsibilities as Office Manager is to ensure that the staff who answer our  telephones are trained in the proper handling of incoming calls.  When you call and ask for a staff member by name, our job is easy.  Sometimes, however, you may call us and not know exactly who you need to speak with because an unfamiliar circumstance has come up.  It is especially at those times that we want to ensure we get you in contact with the person best suited to handle your call. 

We currently have 39 staff members at HoG and many of them are often out of the office, visiting clients, attending clinic, or making presentations in the community.  We never want you to be passed from one staff member to another until you are finally put in contact with the one that can help you. And, if possible, we try to connect your call to a person who is in the office and available to help you right away so you don’t have to leave a message.

On a side note, I’ll bet you didn’t know that it’s our custom at HoG never to use a client’s full name when we page a staff member.  And I’ll bet you didn’t know that when HoG staff members discuss a situation regarding a client’s factor order or insurance, etc., we don’t use the client’s name but instead refer to him by a computer code.  These are just two of the ways we protect our clients’ privacy and abide by HIPAA regulations.  In fact, we’ve got a staff member who we affectionately refer to as the “sheriff” because she is always reminding us of our responsibilities in this regard.

So the next time you call, help us help you by answering the  few questions that will enable us to get you to the person who can best assist you “lickity split.”

I don’t get out much.  I spend most of my working hours in the office, staring at performance reports, collaborating with coworkers on the hottest topics in hemophilia land and generating strategies for optimizing operational efficiency – whatever that means.  I seldom have the pleasure of talking to a client or an HTC nurse or social worker.  I don’t go to Camp Wannaklot, Family Camp or many other client activities that we sponsor.

But, occasionally, I have the opportunity to experience firsthand what sets Hemophilia of Georgia apart from other companies that boast of providing comprehensive disease management services to the bleeding disorder community.  When it comes to serving the Georgia bleeding disorder community in Georgia, is Hemophilia of Georgia “unique”?  I vote YES.

Since I speak Spanish, I often have the pleasure of speaking with clients who have yet to master the English language.  Early one morning I took a call from such a client.  I had a problem on my hands.  Yes.  I spoke his language, but I was totally confused by his questions. 

Caller:  I have an appointment with my nurse this morning.  I lost the directions to your office.  Can you give me the address?
Me:  8800 Roswell Road……
Caller:  Roswell Road?  My nurse _____ gave me another address.
Me:  Nurse ______?  We don’t have a nurse named ______.
Caller:  Yes.  She’s my HoG nurse.   She’s at Emory.
Me:  You must have an appointment at the Emory Hemophilia Treatment Center.
Caller:  Yes.  Yes.  The HTC at Emory, you know, HoG.

Or, sometimes a client will give an HTC employee a new address and think that he has given it to HoG.  Sometimes a client will ask me if I can relate a message to an HTC physician “next time you see her.”  See her?  Me?  My office is nowhere near an HTC.

While such incidents can lead to confusion and communication challenges, we embrace and celebrate them!  Our relationship with the HTCs is seamless, tight, real and, yes, unique.  It exists to such an extent that clients think we’re one and the same!  It’s a powerful, integrated way to deliver health care services that result in disease management at its best.

The HoG and Beacon pharmacists and staff work closely with the health care professionals at the Hemophilia Treatment Centers throughout the state to coordinate treatment plans for every client.  The HTC hematologists speak with our pharmacist on a regular basis and our pharmacies send dispensing records to the prescribing physicians every month. In addition, the HoG outreach nurses talk with the HTC staff and the HoG or Beacon pharmacists frequently to share important information about clients and their individual treatment.

All of this integration can be a little bit confusing at times for the clients we serve, but it is a welcomed confusion nonetheless.  If you’re a client, please remember that while we share care plans and some medical information, when it comes to changes in address, phone numbers and insurance information, you need to share twice – both with HoG and with your HTC.  And, if you should call early one morning and need directions to an HTC, I now have addresses and directions to all of our HTCs!

By Michelle Fitzwater, Managed Care Contract Specialist

In the eight years I have worked for HoG one of the most common questions I have heard is “why doesn’t HoG take my insurance?”  It is a question that bothers me every time I hear it. HoG does not “take” or “not take” insurance.  If your insurance company will reimburse us for the medication we send to you, we will bill them. 

The problem is that every insurance plan is set up with specific rules that we cannot control.  Your employer (or you, if you have an individual plan) selects the particular insurance plan you have.  Even different plans within the same insurance company have different provisions for processing claims for factor products. Some plans let you choose any pharmacy you want to for your factor concentrate.  Other plans require that factor be dispensed by a specialty pharmacy that they choose.  

In order to find out if your insurance will pay for your factor if it comes from the HoG pharmacy, we have to check the requirements of your specific plan.  We work diligently to be in as many insurance company networks as possible so that we can serve everyone who wants to use the HoG pharmacy.  We also sign numerous contracts with drug benefit providers so we can be there for you when you have an insurance change.  Unfortunately we have not been able to cover them all yet but we will continue to try one contract at time.

Here’s an example of a recent success story.  The company John works for switched to a new insurance company that would not allow him to use the HoG pharmacy.  He had been with HoG for many years and wanted to continue to be able to pick up the phone and speak with Leigh at a moment’s notice or have his HoG nurse help him with any infusion problems.  He decided to have a discussion with his HR director to tell her about HoG and, most importantly, that we might be able to save the company money. He told her about HoG and all the benefits we provide to him.  He also asked the HR director to call me.  After I explained that using the HoG pharmacy would save John and his employer $2000 compared to the other insurance company, she agreed to allow John to use HoG.  We had to work through some details in the insurance company processing system but ultimately John was able to order from HoG again. 

If you want to use the HoG pharmacy but aren’t allowed by your current insurance plan, the first step is to meet with your employer. Usually employers are trying to save money for the entire company and do not realize how their choice within the benefit structure will affect you or your family.  You should request a meeting with the appropriate person in Human Resources and simply tell them your story.  Let them know you understand the costs of hemophilia and what you are doing to keep costs down, such as attending clinic at the HTC, and that using the Hemophilia of Georgia nonprofit pharmacy may be less expensive than other options.  This works best with self-funded plans, which are usually big companies that pay their employees’ medical bills themselves instead of going through an insurance company.  Once you’ve talked to your HR department, please put them in contact with me so I can show them the savings they may see by using HoG.

Another way is to negotiate an individual agreement with a case manager at the insurance company.  We have found that several insurance companies are willing to look at individuals instead of changing group plans.  This is a complicated and time consuming process but we have been successful in getting contracts at in-network benefit levels even if we are an out-of-network provider. 

Finally, we pursue contracts directly with the insurance companies.  Our goal is to become an in-network provider for your plan.  We have arranged meetings with companies like Blue Cross Blue Shield, Humana and Cigna to tell them our story.  We want to ensure we can continue to provide your factor products and keep your costs down.

We are not always successful.  There are times where companies are locked into agreements they cannot alter.  There are other times where there is a national level contract and the company is not willing to work with us.

If you cannot order from the HoG pharmacy and would like to explore developing an individual agreement or arranging a meeting with your employer, please contact me. I would be happy to explain how HoG may be able to save money for you, your employer and your insurance company.

Wow. She was afraid of me? I was surprised by her statement but glad that she could say it if that’s how she felt. As a social worker I (almost always) support honest self-expression even when it is not something I’m thrilled to hear. I will call this Mom “Julie.” It’s not her real name. I want to thank her because this spontaneous expression of relief was a valuable reminder that my profession is often misunderstood.

Julie’s statement came toward the end of a productive home visit in which lots of ground was covered. Sitting in her living room, we had talked about so many things that were worrying her, including her child’s behavioral problems at school that were not related to his bleeding disorder. I could almost see the weight lifting from her shoulders. This was a visit with one of our new HoG families, which included a recently-diagnosed child with a bleeding disorder, his mother and young siblings. The child’s father was at work, but Julie’s concerns were his concerns. Both parents recognized that their fears were taking valuable time and energy away from their other children, one of whom had another health condition.  

Because there seemed to be many questions about insurance and school issues, and because Julie was understandably overwhelmed, the HoG outreach nurse making initial contact by phone had suggested that I come along. When I called Julie to ask if that was okay she did seem hesitant for a moment. But once I explained my role as part of Hemophilia of Georgia’s family support system it seemed that her misgivings went away.

So when Julie brought up the fear factor after I had been there for over an hour, my eyes got pretty big and I said, “You were afraid of me? I guess the words ‘social worker’ mean different things to different people.”
And it’s so true.

I remember another parent, a father, saying to me years ago, “I don’t need food stamps and I don’t beat my kids. So why do I need a social worker?” He was saying this with humor in his voice, but it’s probably the way a lot of people think about us. It’s a curious thing, but a reality.

Social workers don’t have much time for personal PR. And that’s why I’m making the time for this blog. When I was working on my master’s degree in social work at Columbia University in New York City I was following a calling that had taken me away from my previous profession of journalism. As a student, I did an internship with homeless veterans suffering from Post Traumatic Stress Disorder. I did another internship on an AIDS unit in Brooklyn, back when the diagnosis was a near-certain death sentence and when little was known about the virus.  I sometimes asked myself, “Cathy, what in the world were you thinking when you signed up for this?” But the calling to jump in and help overpowered my fears. The drop-out rate is high in social work schools and we were all encouraged to take a long look at our motives for being there. And the truth is that I love helping people. I love championing the underdog. I have a strong sense of justice.

At no time in my studies did I take a class on how to turn in parents to child protective services and have their children taken away from them. Because it is such an important subject, that was probably a big hole in my graduate level education. But honestly, it was the farthest thing from my thoughts. Still, I think it’s the first thing that comes to mind for many who hear the words “social worker.” Television has a lot to do with that.
I will say that during my nine years of employment at Children’s Healthcare of Atlanta at Scottish Rite I saw more child abuse and neglect than I ever wanted to see. It is real and probably under-reported. When it happens social workers are among the mandated reporters (along with doctors, nurses, teachers and many others) who are required legally and ethically to help keep these children safe. In fact, not reporting concerns about child abuse and neglect can result in loss of license and jail time. It’s taken that seriously – and it should be.

But here at HoG, my social work efforts focus mainly on finding resources, advocating in schools and other systems, problem-solving, staffing family events and offering emotional support. While I am qualified as an LCSW to provide therapeutic counseling, those clients needing on-going support should have someone in their community to fill that role. I am one of four social workers at Hemophilia of Georgia and my territory includes all of Fulton and Gwinnett counties and most of northern Georgia. So the right thing for me to do is help someone find a good counselor near home when the need is there. Mental health conditions such as depression, anxiety and trauma-related pain often are overlooked by our society. It is a specialty of my profession to see injury, illness and “bleeding” of the psyche in the same way that doctors and nurses see these things in body. Many in the medical field recognize this expertise among social workers and call on us whenever there is a mental health need or a need for family advocacy and support.

If you don’t know who your HoG social worker is, please just call the HoG office to find out.  We’d love to talk to you!

Cathy Hulbert, LCSW
Hemophilia of Georgia Social Worker

In January 2003, I began working for Hemophilia of Georgia as the Camp and Activities Coordinator after I had volunteered and completed an internship at HoG.  From my very first interaction with the organization, I knew that it was a great organization and one that I wanted to be involved in.  I grew up camping with my family, so the Camp and Activities Coordinator position was a perfect match for my interests and well suited to fit my professional career goals.  I had a great experience being the camp director at HoG and watching and growing with the campers in my three years as the director of Camp Wannaklot.  The job required a lot of responsibility and many long hours but it was well worth it in the end to see the campers develop a greater independence in the treatment of their bleeding disorders and gain a better understanding of their diagnoses. 

In November 2005 I accepted the Director of Development position at HoG.  This was a good career move for me as I was then able to use all of my camping and program experiences to help raise money for the organization.   Besides coordinating the annual Hit 'Em for Hemophilia Golf Tournament each fall, I also am responsible for various fundraising initiatives at HoG. 

Raising money for Camp Wannaklot is one of the major fundraising campaigns that I coordinate each year.     The passion and dedication I have for the Camp Wannaklot program comes naturally and I take great pride in raising money for such an awesome program.  As I reflect on my years as the director of Camp Wannaklot, the great memories make it really easy for me to promote, encourage and support donations to help fund Camp Wannaklot each summer. 

Even now, I often get to go back to Camp Wannaklot to help with some of the camp programs.  One year I was the “livestock judge” for the county fair livestock show and got to have a lot of fun judging the animal costumes that the campers created.  I know personally the tremendous impact the Camp Wannaklot program has on campers and how very important it is to continue to get support from loyal and dedicated donors.

So from someone who has been “there done that” and has worn two very different and unique hats at HoG, I can’t tell you how thankful I am for both Camp Wannaklot and the donors who support the program each year!  THANKS!

The public broadcasting version of "Bad Blood" is a version that has been edited down to one hour in length.  I've only seen the full length documentary, so I don't know what has been left out.  When I saw the 82 minute version, I thought, "there is so much more that could have been told."  You can read my Horizons in Hemophilia newsletter article for more details about the documentary. In this blog post I want to talk about my experience of seeing the film.

Some background: I started working at Hemophilia of Georgia in 1990 but that was not my first contact with the hemophilia community.  For the five previous years, I had worked with the Georgia Department of Human Resources AIDS Project.  As a nurse, I had personally taken care of three of the first five "official cases" of people in Georgia with hemophilia and AIDS: two in the hospital and one as a volunteer in his home.  I have my horror stories and I was worried that "Bad Blood" would focus on the suffering so many people experienced in the 1980s.  It doesn't. The filmmakers tell just enough to personalize the story.  Two people with whom I watched "Bad Blood" felt differently though.  They had both lost family members with hemophilia to AIDS.  They found the documentary painful to watch.

I also expected "Bad Blood" to be more damning of the pharmaceutical companies, the Food & Drug Administration, and the National Hemophilia Foundation.  The documentary does show how all three failed the hemophilia community and share blame.  I think it could have been more hard-hitting.

I was surprised that I learned new information. After working on the Ricky Ray Hemophilia Relief Fund Act and the settlement with the pharmaceutical companies, I thought I had heard all there was to know.

So do I recommend watching "Bad Blood"? Yes, I do, especially by people in the bleeding disorders community.  I guarantee you'll learn something.  It will help you understand our community better.  You'll appreciate the importance we put on advocacy and oversight.  You'll see why we give families all the facts we have so they can make informed treatment decisions.

These opinions are my own and don't necessarily reflect those of Hemophilia of Georgia or its other staff members. We invite you to share your thoughts on the "Bad Blood" documentary.

Jeff Cornett RN MSN
Director of Training, Research, & Advocacy