The U.S. Virgin Islands is our next stop for Cystic Fibrosis Around the World.
The group of islands, located in the Caribbean, is officially designated as a territory of the United States. According to the interview the known cystic fibrosis patient population is 1. I’d love to find out more about that statistic, though.
St. Thomas, U.S. Virgin Islands, Anonymous child living with cystic fibrosis (parent completed interview).
- About how many people in your country have cystic fibrosis?
[My son] is the only one [with cystic fibrosis]. [Total] population [of the islands is] about 100k.
- Do people in your country know what CF is?
No, not really. Since we were diagnosed awareness has grown within our immediate circle and with acquaintances, but it is on a very basic level for most people.
- When were you diagnosed? Why were you tested?
He was diagnosed when I was 5mos pregnant. I was tested because my sister, who was also pregnant, was notified she was a carrier. My doctor said I should be tested as well. Then hubby was tested. When he was positive they tested the fetus.
- Were you encouraged to be open about your CF? Do your friends and family know that you have CF?
People asked us if we were going to be open or keep it quiet. Our approach has been to be honest and open. To hide it makes it seem like something’s wrong or bad, and provides more ammunition for children who can already be cruel and parents who can be over protective and nervous. When people ask, we tell them our situation, our challenges, what we do to handle it and how it works. It’s part of our life. We try to make it no big deal.
- Does your insurance/healthcare cover costs? Does it fully cover all medications and treatments available to patients with CF? Does the government provide your healthcare or is insurance offered privately?
While there are not a lot of employment options here, I have been able to maintain jobs with insurance benefits. All meds so far, except vitamins/supplements, have been covered. I have been very fortunate that way.
- Do you have access to drug studies/trials? Do you have access to new medications?
I believe we are too young for most studies, but my doctor is open to them and will advise us when we qualify. They also inform us of new drugs during our visits.
- Who is on your CF care team? (Doctors, nurses, etc.) Here on St. Thomas we only have our pediatrician.
We fly to Connecticut every few months for our CF checkups. Our care center is located in CT and is part of Columbia in NYC. They have a pediatric pulmonologist, social worker, nurse, respiratory therapist and a nutritionist, all of whom we see at each visit.
- How far away is your CF clinic? Is there a difference between adult/child clinic/care for CF?
About 1700 miles.
- How often do you go to the doctor (non-emergency)? Is it easy to get an appointment? What do you do in case of emergency?
We see our pediatrician annually and in between if we get sick (which is only about 1 or 2x a year). Our pediatrician is very good to us and always makes time to see us. We go to our CF doctor every 3 to 4 months. For an emergency my CF doctor is always available to talk to me about his situation and provide guidance to us and our pediatrician here.
- If you need IV antibiotics, can you do them at home or do you need to stay in the hospital?
The only time we’ve needed IV antibiotics so far was when he was 8mos old and we happened to be in the states so we checked in there. Our hospital here is definitely not our first choice.
- Is the Vest a typical treatment option? What other treatments are common in your area? Which are not?
We are the only one here with CF. The vest is used daily.
- Are you encouraged to exercise? Specific?
Our doctor(s) always talks to us about exercise and encourages us to do anything and everything. Given where we live, we have a very outdoor lifestyle. Boating. Beachin’ it. Hiking. Fishing. At present soccer and golf are all year round and he started baseball this year. On a daily basis he is running around outside like any other normal kid.
- What CF specific medications/therapies have been developed in your country? Does your country promote new drugs?
- What role does nutrition play in your CF care? Do you have a feeding tube? Do you have CFRD (diabetes)?
We do not have a feeding tube or diabetes. I try to feed him healthy and ‘hearty’ but it doesn’t always work. He’s 7. That’s never easy, even for normal kids. And his brother is 8, so I have to manage what they both want vs what each should have.
- What do you wish could be better about your nation’s care for CF patients?
More knowledge and understanding that the treatments and drugs really and truly make a difference in their life. Research money is actually doing something with this disease. It DOES improve their quality of life and prolong their life. So please, don’t pull the funding that is literally saving their life.
- What do you know about CF Lung Transplants?
Not much. That’s too much for me to take in at this point.
- Did you go to college/university or advance your education elsewhere (Or plan to go to college/university)? Were you encouraged?
I am going to encourage him to live a normal life and just be smart about it.
- What is the National CF Foundation (if there is one)? Does this Foundation (if there is one) provide assistance in every day life and education? (example: scholarships, transplant aid, educational materials, etc.)
There is no foundation in the territory.
- Is there anything else you would like to add? Is there anything specific or unique about CF care in your country compared to the rest of the world that you know of?