What can we learn from South Africa?

Let me give you a little background on South Africa -- things I learned as we went along.  When I visit another country, I always look at the differences -- not to criticize, but rather to see what we can learn from their experience.

As most people know, South Africa went through a painful period of Apartheid -- institutionalized segregation that was at least as bad as the worst problems in America.  From 1948 to 1990, everyone had to carry a card “white” or “non-white”, and blacks were excluded from most non-menial jobs.  There was no training of black doctors until after 1994. 

There were riots and political unrest from 1990 to 1994, until the new constitution was adopted and the government was formed.  During that time, South Africa was a dangerous place to live.  More than 230,000 people left the country, mostly middle-class professionals, including many doctors.  There are approximately 2000 job openings for doctors and nurses today in South Africa.

There are fine medical schools, but medical jobs are stressful.  Because of the staffing shortages, everyone is overworked and underpaid.  25% of the population has AIDS, which increases risks for medical personnel.  Australia, New Zealand, and Canada advertise in South African medical journals, luring well-trained doctors to better-paying, lower-risk jobs in their countries.  As one example, 20% of the doctors in Saskatchewan, Canada, were trained in South Africa.

What are the prospects for diagnosing a rare disease in an over-burdened medical system?  Very low.  Statistically, one person in 32,000 live births will have VHL.  But until that person gets a proper diagnosis, he is at very high risk of serious medical problems.

Among people who already have good medical care, the chance of diagnosis is reasonably good.  All of the people we met at this meeting were of European descent, settled in South Africa since the 17th, 18th, or 19th centuries.  They represent 9% of the South African people.  Another 9% are “colored” (mixed race), 2% are Asian (mostly from India), and 80% are native black Africans.  In addition to the racial differences, there are significant differences in the historical health care access of these other races. Health care for whites has been quite good for a hundred years. You may remember that the first heart transplant in the world occurred in South Africa.  Not so for the other 91%.

How does a country achieve equal access to health care after such a history?  Very slowly.  People with good professional jobs have health insurance and a health care system similar to the U.S., plus a “safety net” of government-supported health care.  But people in the vast rural areas, or people whose only health care is the government-supported hospitals come to the walk-in clinic in the morning and sign up on the list of people to be seen.  Perhaps 125 people are on the list.  At the end of the day probably 75 people have been seen and treated.  The rest are asked to please come back another day.  And so it goes.

This is not a good scenario for diagnosis of any rare disease, including VHL. 

While we understand the issues, we cannot give up.  Dr. van Rensberg is working to raise the consciousness of doctors so that they will think about a brain tumor or a kidney cancer, and send people to her for genetic diagnosis.  VHLFA South Africa will raise the visibility of VHL among the people as well.

It’s a start, and an admirable start.  We applaud our colleagues in South Africa and hope that you too will do whatever you can in your piece of the universe to raise visibility, improve diagnosis, and help others get the information they need to manage their health.

Hear more about this trip at
http://PowerfulPatient.org

On-demand radio shows or podcasts:
Long-distance Travel, Eric Lipp, Altheada, and Joyce
The Healthy Traveler, Judy Fern RN, Kevin Cahill MD
Our Trip to South Africa, Joyce and Altheada
Conversation with Markus, Joyce and Markus
Caregiving: A Heartbeat Away, Joyce and Fred
...or request copies on CD for $10 each

Read Joyce’s journal at
http://vhl.inspire.com/joyceg98

As printed in the VHL Family Forum 16:2, May 2008. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.