By Trish Selver

I am proud of the accomplishments that have been made by the TCI Kidney Foundation and even more excited about the prospects for its future.   I served as the Kidney Foundation President for the last six years after founding the organization with my husband, Curtis.  We created this foundation to raise funds to open the Provo Dialysis Unit and to raise awareness and education in the community on the risks of Kidney disease.   

Recently there have been reports circulating about the organization and about Curtis and myself personally.  I want to take this opportunity to address these misleading statements and clarify the situation.  

The Kidney Foundation is a non-profit organization run totally by volunteers.   We work closely with the TCI Government to support Kidney patients.   We provide support in a number of ways but primarily we were responsible, through donations, for completely outfitting the Dialysis Unit, also known as the Stephanie Williams Kidney Centre.  This involved attaining the dialysis machines, water filtration system, furniture, generator and all of the fixtures and fittings that are used thee.  The machines are expensive ($22k each) and represent a large part of where the funds we have raised have gone – it has cost over $200k to outfit the dialysis unit.   The alternative for the 15 Provo patients would be to continue to travel to Grand Turk three times per week for dialysis. 

However, the unit at the Grand Turk hospital is not in a position to accommodation this number of patients in addition to their own patients so without this Provo unit the health of the Provo kidney patients would be in great jeopardy.   The Dialysis Unit opened with four machines and now it has seven – all of which have been purchased though our foundation with donated funds. 

In addition to bringing these vital machines to the country, we have been responsible for providing a range of patient support including sponsoring a visiting Nephrologist since 2003; providing financial assistance to patients though Hurricane Ike ($500 per patient in Provo and Grand Turk – totaling $11,500); purchasing air ambulance insurance for Provo and Grand Turk patients ($12,000 over 2 years) and over the last year, stepping in, when funds were available, to purchase Epogen.  To date the foundation has spent $22,000 on Epogen.  

As reported in the news, patient care at the Stephanie Williams Kidney Centre is slipping and it recently ran out of supplies.   Staffing, managing and running the Dialysis Unit is the responsibility of the TCI government.  The medical supplies needed were at Tropical shipping, however releasing them was held up due to unresolved financial matters between Tropical and the TCI government.  

I was off island at the time and did not know about this.  As soon as Curtis became aware of the situation, he managed to have a couple of week’s worth of supplies released so that dialysis treatment was not interrupted.

The Foundation was formed to help patients by augmenting government services.  In small communities like ours – and especially under challenging economic conditions, non-profit organizations play a critical role in helping fill the gaps that exist between the government and private sectors.  Epogen – the essential medicine needed by all dialysis patients – is something that is normally ordered and administered by the medical department for its patients.  Recently, the supply of Epogen to Turks and Caicos has hit some roadblocks – mostly due to financial issues between the supplier and Myrtle Rigby.  

On three occasions to date, the Kidney Foundation has had to step in and order a supply in Epogen for all Provo patients.  This presented both financial and administrative challenges as the Foundation had to find other means of sourcing and shipping the medication here.  A one-week supply of Epogen for Provo patients costs approximately $6,500. 

Currently the Foundation’s bank balance is around $11,000.  The issues surrounding the supply of Epogen are complicated, but the bottom line is that the Foundation will – and always had – act in the best interest of patients.  We understand that in emergency situations sourcing a supply of Epogen was essential – however this is not a sustainable plan and a better long-term solution needs to be put in effect.    

The comments and accusations about the foundation and about us have hurt, I cannot hide that fact.  However, even though I’m deeply hurt and disappointed, I realize that this situation is bigger than personalities and feelings.  The issues being raised by these patients are serious and life-threatening and needed to be addressed long ago.  I hope all the parties involved – including the TCI Government - realize the life-altering implications of recent actions and use this as an opportunity to put a solution in place.  

Looking ahead, I have great faith in the foundation moving forward under the leadership and direction of Mr. Richard Padgett who is himself a Kidney Transplant recipient and a former Chairman of a UK Kidney Foundation.  I know he has the vision, experience and expertise to keep the foundation on track and helpful to patients and their families.