The Coalition for Hemophila B – 2006 Survey Results

Recovery/Half life still an issue – need more education

Product

Benefix 80%
Mononine 12 %
Alphanine 7%
Other 1%

Age

1-12 yrs 40%
13-19 30%
25-49 25%
50+ 5%

Family History 70%
No Family History 30%

Severe 70%
Moderate 20%
Mild 10%

50% of men 45+ had or have Hepatitis C

Home Healthcare 60%
Hemophilia Treatment Center 25%
Retail/Specialty Pharmacy 15%
Other 1%

Treatment

On Demand 60%
Prevention Prophy 10%
Prophylaxsis 30%

Boys with Hemophilia 98%
Girls with Hemophilia 2%

Would you change product during an operation?

NO 90%
YES 10%

Reason: If Doctor recommends it
Another product might work better

Activities

Archery, Baseball, Boating, Ballet, Bicycle Riding, Basketball, Boogie-boarding, Boy Scouts, Bowling, Camping, Canoeing, Cub Scouts, Dodgeball, Dancing, Football, Fishing, Fencing, Golf, Guitar, Gymnastics, Gardening, Hiking, Horseback Riding, Hunting, Jogging, Jump Rope, King Fu, Kickball, Kyaking, Life Guard, Marching Band, Piano, Photography, Raquetball, Rafting, Rollarblading, Rodeo, Restoring & Showing Antique Farm Gas Engines, Swimming, Sailing, Soccer, Skateboarding, Softball, Singing, Soccer, Skiing, Ski Racing, Showing Cattle,Tee-Ball, Tae Kwon Do,Tennis, Track Cross Country, Walking, Weight Lifting, Yoga

Reasons for switching product?

Product Purity 83%
Safe, Effective

Doctor Recommendation: 15%

Works better for me
Recovery good 1%

Allergy/Inhibitor
Availability, Costs 1%

Emergency Room Experience
Funny after 12 years we only have 1% of people with hemophilia having a good experience

Emergency Room Experience

Takes too long
Inconvenient, Torturous, Dangerous
They don’t listen
Nightmare, Arduous, Harrowing
Lack of knowledge on Hemophilia
Traumatic
We stopped going
Slower than paint drying
Horrible, we infuse first and then go (if we think something is sprained or broken)
Difficult

Funny Bloopers from Doctors

“When did he contract Hemophilia?’
“Your overdosing him”

Funny answers When asked to describe your experience or your childs with receiving treatment for Hemophilia in an Emergency Room

“Unlikely to happen – they don’t have it or know what to do with it (regarding hemophilia)”

“They don’t care, my hospital is so little they don’t have time for me”

“ER Treatment is a course of treatment I try to avoid at all costs”

“A circus -they still look at me like a bearded lady!”

Funny Parent’s comments on type of info needed for ER physicians and nursing staff

“Anything they can get because obviously thar are not getting any”

Information that ER’s should have:

Much information about Hemophilia and different types, also severity
Have factor on hand ASAP
Know that people with hemophilia also carry factor with them
LISTEN to the Parent or Patient
Bleeds need to be treated IMMEDIATELY – Then examine
LET Parent or Patient mix factor if you do not know how
TRUST Parent or Patients Knowledge
KNOW bruising is not child abuse
Know each case is different based on type, severity, inhibitors, etc.
Teach them how to reconstitute factor
Classes on hemophilia
Dosing chart for As and Bs
Immediate Ice and Pressure beneficial
Poster on wall – TREAT FIRST DO NOT MAKE A PERSON WITH HEMOPHILIA WAIT

(I think everyone should give a copy of this to their local ER Room)

Parents should have a:

Medic Alert or card with info on Hemophilia Type,
severity, factor product used, allergies, medications, doctor info

Have your Hematologists call the ER before you arrive.

Type of information helpful to you and/or your child

(Rated by most popular responses)

1) Current Research in Hemophilia
2) Gene Therapy
3) Hemophilia Information Sources
4) Manufacturing Process
5) Support Groups
6) Prophylaxsis
7) Product Information
8) Inhibitors*

No of People interested in having seminars in their area

YES – 99%
NO – 1%

Topics for seminiars (rated by most popular response)

1) Current Research in Hemophilia
2) Gene Therapy
3) Hemophilia Information Sources
4) Manufacturing Process
5) Prophylaxsis
6) Support Group
7) Product Information
8) Inhibitors*

*Note: Inhibitors low on the list due to small percentage of people with inhibitors

Other Topics of Interest:

Insurance
-Options
-Switching at Adulthood
-Government and Insurance Issues
- CAPS – Making medical payments

Scholarships, Dental Treatment, Surgery
Options, Woman’s Bleeding Disorder,
Transition from Port to Peripherral, Goiing
to College with Hemophilia, Orthopedic Information
New Transgenic Therapy,

Current problems & Future concerns regarding Factor

Price of Factor
Insurance Costs
Lifetime Caps
Co-Pay Burden

There are many concerns within the Hemophilia B community regarding Insurance
problems. There is also a great fear of dictatorship of sole soure providers, being
forced to switch suppliers, losing their choice of factor, and losing insurance because
rates go up so high each year. Copay issues, Mother’s have great concern whether
or not their child will be able to get a good job (and keept it) and have insurance
coverage once out of college. People are reaching their lifetime caps and worry
about insurance. Those on Medicare cannot afford the 20% co-pay. These problems
are very real and most people are starting to feel the effects.

I share with you some comments below:

“How will I afford current private insurance? How will I ever pay
what I already owe? $75,000.00. Had to switch product,
my cap maxed out two years ago”. – 17 year old with Severe FIX

“Insurance problems are happening to us now. Every dose is
questioned and watched. Very scary” – Mother of 16 year old with Severe FIX

” I am a teacher, I may have to leave my district and start at the
bottom to be eligible for new insurance.” - Mother 8 year old with Severe FIX

“When my husband was employed by small companies they had
no trouble figuring out who was driving up health care costs for
them; needless to say it was difficult to maintain a job” -Mother of 10 year old with Severe FIX

“Choice of provider was taken away by Insurance company” -Mother of 8 year old with Severe FIX

“The Insurance companies are limiting the amount of factor I can keep
on hand – what if I have an emergency?”- 45 year old Man with Severe FIX

“How do we prevent our freedom of choice from disappearing?” - Mother 5 year old with Severe FIX

“I have great worries about my son leaving college and having to get a
job and insurance” -Mother of 18 year old with Severe FIX

“I live in panic of my son being uninsurable, we live in a place where
there is high risk insurance, which he has but he wishes to move
our of state where there is no high risk pool!” – Mother of 25 year old with Severe FIX

“I foresee copay burdens, insurance companies telling us what brand of factor to
use, whether or not we can have a bleed treated and how much factor we can
have in our home.” -Mother of 3 year old with Severe FIX

“Dealing with Insurance companies, explaining his special needs.
Speciality Pharmacy Items and actually talking to the right one
to get things done. I find dealing with them is the biggest
nightmare of the whole “hemophilia scene”. Mother of 23 year old with Severe FIX

Strong Statement and Hard Questions:

If We find a company that sells factor at a lower cost, WE should be able to use that
company and not have the insurance companies dictate to us, afterall, WE have to
lookout for our lifetime caps!”

Why can’t WE bring factor to the hospital? It would probably be cheaper. If WE carry a
prescription would WE then be able to bring it to the hospital?

How can insurance companies tell us how much factor WE can have on hand?
When did they become experts? What if their is a mail strike or some
type of natural disaster and they cannot deliver the factor on a timely basis?

NO one can afford to pay the 20% Medicare Co-pay – That’s totally unrealistic.

Recommendations for the Factor Nine Newsletter

No Changes 98%
Great Job
Very Imformative
Interesting Articles
Keep up the Good Work

More Pictures 2%
More Local Information
More Often
Blog for Older Hemophiliacs
More Personal Stories of people
(teen and adults) with FIX, Problems
accomplishments and success