The Basics of Comprehensive Care

What is comprehensive care?

Comprehensive care is a team approach to the treatment of bleeding disorders.  The team of experts meets regularly at the treatment center to plan your care.  The team may include:

• a bleeding disorder doctor (hematologist)
• a nurse
• a social worker
• a physical therapist
• a joint doctor (orthopedist)
• an occupational therapist (OT)
• a psychologist or psychiatrist
• a dentist
• a gene expert (geneticist)
• a gynecologist.

A lab for blood tests and x-rays is near the treatment center.  If you need help from an expert not on the team, such as a surgeon, the team will refer you to that expert.

Comprehensive care begins when you are born and lasts your whole life.  It goes beyond simply treating bleeding.  The team tries to prevent problems.  Comprehensive care means taking care of small problems before they become big.  For instance, it is much easier to fill a cavity in a tooth than to pull a tooth that has been allowed to decay.

One way the team can prevent problems from a bleeding disorder is through regular check-ups that begin early in life.  The team will talk with you about your needs and decide how often you should be seen at the HTC (hemophilia treatment center).  Most people go every six months to a year even if there are no problems.  If you are having a problem, you'll probably need to go more often.

The team members deal with more than just your body.  They also care about what you are thinking and feeling.  Team members can help with day to day problems such as troubles at work or with your family.  The team looks at you as a unique person with your own lifestyle.  You and your family help plan your care and are, in fact, team members.

If you live far away from an HTC, you may decide to have a doctor closer to home provide most of your care.  Your local doctors can work with the team at the HTC to make sure your care is complete.  Comprehensive care needs everyone staying in touch and talking about your treatment:  the team members, other doctors or experts, you, and your family.

What is the goal of comprehensive care?

The goal of comprehensive care is for the person with a bleeding disorder to lead a normal, long life.  The team looks for ways to help people do as much as they can and enjoy life to the fullest.  You receive support to overcome any problems with your bleeding disorder whether they are physical, emotional, or social.  When you have the freedom to direct your own life, you learn to care for yourself as much as possible.

What are the benefits of comprehensive care?

Comprehensive care can benefit the person with a bleeding disorder, his family, and his community.  Dr. Peter Levine studied how people with hemophilia benefit from comprehensive care.  He looked at how people were doing the year before comprehensive care began (1975).  He compared it to how people were doing after ten years of comprehensive care (1985).  He found that by the tenth year:

• The average number of days people spent in the hospital had gone down 83%.
• The average amount of time they missed from school or work went from over two weeks to less than four days
• The amount of money the average person spent out of his own pocket to treat his hemophilia went down from $1,700 to $396 per year.
• The total cost of treating someone with hemophilia went down from an average of $31,600 a year to $8,127 a year.
• The number of people with hemophilia who did not have a job went from 36% down to less than 10%.

Dr. Levine showed that comprehensive care was an effective approach to treating people with hemophilia.  When the health care costs go down and the person with hemophilia is healthy enough to go to school and work, everybody benefits.

The Centers for Disease Control and Prevention (CDC) also studied the care given by hemophilia treatment centers.  They found that in the 1990s, people who received care at an HTC had a lower death rate than people who were treated somewhere else.

With comprehensive care, a person with hemophilia can gain more control over his life since he learns both to treat himself and to prevent problems.  He can avoid time spent in the doctor's office or in bed.  He will have better joints.  As he learns to direct his own life, his feelings of self-worth will increase.  He will be able to give more to society.

How much does comprehensive care cost?

Hemophilia is very expensive.  Factor alone may cost $2,000 to $350,000 a year.  If a person with hemophilia needs surgery, his medical costs for the year can total well over $500,000.  It may seem at first that comprehensive care adds to the costs since there are more experts to be paid.  In fact, comprehensive care saves money because it prevents the problems from hemophilia that cost the most.

Your first comprehensive care visit will cost the most, from $1,200 to $1,500.  In this visit, you get a complete check-up, including your medical history and a number of blood tests.  Many of the tests never have to be done again.  You need them in the beginning so the team has a clear picture of your condition.

Some centers do not charge for some of the tests.  Some states cover the cost.  The portion of the total cost that the person with a bleeding disorder must pay will vary from place to place.  It is something to check into before moving or traveling.  The chapter Money Matters has suggestions for finding help to pay medical bills.