Concerned about the challenges faced by chronic renal failure patients who have been placed on dialysis, Saye Abigail Yong is hoping to bring about change by sharing her experience and the stories of those she has met on her dialysis journey.
Yong developed kidney disease because of diabetes and high blood pressure. She said she had a seizure which landed her in the hospital where she spent a week before being told by the nephrologist that she was not at the stage where she would need dialysis. However, at the time of her visit, her blood count was very low, and she continued feeling unwell after returning home. Because of complications with her health, she decided to see her primary care doctor who immediately told her that she had to go on dialysis. She was sent to the Woodlands Hospital where she started the treatment. Like many Guyanese, hers began with a procedure to implant a central venous catheter, which is a tube inserted in a vein in the chest.
Yong visits the BioMed Energy Enterprise Dialysis Unit attached to the Woodlands Hospital, where she met nurse Olive Sinclair.
Sinclair told this newspaper that there are three ways to have dialysis treatment. One is through the chest catheter, with which Sinclair said 99% of Guyanese patients start their treatment. There is also the arteriovenous fistula or A-V fistula, which is when a surgical procedure is done to have the artery join the vein. This is done by a vascular surgeon for lifesaving hemodialysis treatment to be possible. There is also the arteriovenous graft, in which a hollow synthetic tube is placed in the arm or leg (if necessary) to connect a vein and an artery. Sinclair said this is usually costly.
Yong said that if she had not seen her primary care doctor, she would have been dead. For this reason, she said, while she is grateful for the care provided by the Georgetown Public Hospital (GPH), she is concerned about access to treatment and the lack of information provided to people with kidney failure, or who might be suffering from factors that lead to kidney failure.
Noting that dialysis is very costly, Yong said she was very depressed during her stay at the private facility. She said, “I … would cry every night because I was worried about how my family would afford to make payments for my treatment and hospital fee.” The fee was $500,000 and that was only the beginning. Yong was fortunate to have friends and family help her pay and she has since been asking companies to aid with her treatment. But she said this is not an option for many.
Yong said that most people who she met either at the GPH dialysis centre or the BioMed centre have issues with acquiring funds to pay for treatment, especially since aid from the government is very limited.
Sinclair explained that while dialysis in Guyana is the cheapest anywhere in the world, the process makes it very expensive, considering the financial status of most Guyanese.
Dialysis requires two to three visits to the centre per week, for the treatment itself. But there are additional visits to hospitals for injections, medication, blood tests and other tests to check for health complications. The number of facilities in the country and their geographical location add to the difficulty people have accessing treatment. Most dialysis units are located in Georgetown and are private, aside from the one at the GPH, but there is one at New Amsterdam, Berbice and another at Annandale, East Coast Demerara.
Expensive
Yong informed this newspaper that people who live at places like Leguan, Wakenaam, Pomeroon and Linden have told her that they could not afford to make trips to the centres more than two times a week because of how costly transportation is. This, added to the cost of their treatment, makes it hard for them to afford it. There is also the cost of the medication used, Epogen. Epogen is indicated for the treatment of anaemia due to chronic
kidney disease, including patients on dialysis and not on dialysis to decrease the need for red blood cell transfusion. Yong explained that because the kidneys are not working, they do not process the blood properly to remove the toxins and waste in the body and without dialysis, the toxins remain and build up. The fluid buildup can eventually flood their lungs or cause pneumonia. Yong complained that the medication is sometimes scarce, and she said this should not be since it is necessary for the patients to survive.
Sinclair explained that many patients use this medication so the scarcity could be due to shipment problems or shortage in orders. She noted that there is also a cost to this medication because after pharmacies purchase it, they have to sell it back and there is no tax exemption. She suggested that the government look into this.
As for help from the government, both Sinclair and Yong told this newspaper that once patients leave the public hospital they have to find their own dialysis centre. The government does not provide free dialysis for any patient. Sinclair noted that the GPH machines are for in-patients and emergency treatment. At the beginning patients could get 24 free sessions, which last about three months if the patient goes twice a week instead of three times. But after the 24 sessions are up, the patients have to fund their own treatment.
Dialysis in Guyana costs between $12,000 and $15,000 per session and patients must have it at least two times a week. This works out to between $96,000 and $120,000 a month. Most people cannot afford this, hence they seek alternatives which do not help, and others just don’t seek treatment, Yong said, adding that this leads to death.
The National Insurance Scheme (NIS) pays 80% of the cost for persons who benefit from it, Sinclair said. Yong added that they then have to pay about $3,000 per session, but not many people have NIS and for those who do, NIS only covers a certain amount of sessions at a time. Patients are expected to pay for their treatment, until the break in between is over.
Another concern is the number of machines available at the public hospital, as compared to the private ones. Yong said that because there are less machines at GPH but more at the private centres, she recommends that the government partner with the private centres to treat patients. Especially since the patient is expected to be connected to the machine for about six hours.
Yong and Sinclair also talked about the awareness of dialysis and kidney failure. Yong explained that the hospital does not inform patients about the risks and factors that lead to it. She said they also do not inform patients about ways to get help with treatment either and the ministry takes a while before it provides aid. She said that she found out about help with the sessions a year after being on treatment.
Diet
The two women also said that, among other things, the healthcare providers do not talk about the dietary changes that need to be adopted. For example, Sinclair said, many patients who have hypertension, lupus, sickle cell or diabetes are not aware that they could have kidney failure because they are not told. She also said that patients are not guided during the first stages of kidney failure to get the catheter inserted, to speak to a nutritionist, or given any other instructions soon enough. She said that chronic renal failure has five stages. So if health officials keep following the patients as they go to clinic on a month-to-month basis they would know when the patients are losing their kidney function and can prepare them for the road ahead.
Going back to the catheter, Sinclair said the waiting time is long for it to be inserted and it can cause infections, which are costly to treat. Yong complained that after she got hers done she had inflammatory problems. She further complained about the lack of education about diet and other factors play a crucial role in the disease.
“They just say you have to go on dialysis. They give us a chest catheter, which is a port for you to go on dialysis. Then say you’re on dialysis… there is no dietician appointed,” Yong said. She said she met other patients who complained that they were not told anything besides that they were being placed on the treatment. She said she would compare her experience with theirs and advise them what to do.
Also, because of the lack of awareness, Yong has decided to start her own advocacy foundation called Kool Beans. She said she hopes to educate people and let them know that they have somewhere to turn to for better understanding of the disease. She would also like to use the foundation to help get sponsors to pay for at least one session for patients. Yong said that by January she intends to have the foundation registered and ready to fulfil its purpose. People interested in joining or knowing more can visit Kool Beans on Facebook or https://www.facebook.com/104978198071192/posts/109742514261427/?sfnsn=mo. They can also contact Yong on 612-9201 or 502-9402.
