Dialysis patients, Kidney Association cry for help
Belize Healthcare Partners has the only Dialysis Center in Belize
There is growing concern over the level of care being afforded to dialysis patients in Belize, particularly with very limited access to the government’s subsidy program and further delays in bringing a new program on stream through the World Organization for Renal Therapies (WORTH). On Friday, dialysis advocates and a representative of the Kidney Association of Belize met with management of Belize Healthcare Partners, a private hospital that has the only dialysis center in the country, to press their concerns, and they called the media to publicly plea for help, in what has become a worrying situation for them.
Andrea Cox, president of the Kidney Association of Belize (KAB) for the last five years, a kidney transplant patient and diabetic herself, lamented that patients are not receiving adequate care: “Presently we are having some serious problems because the trained nurse, the dialysis nurse, has decided to resign from the unit, the only dialysis unit we have in Belize; and her main reason for this is that she has been asking for a doctor to work along with her all the years she had been there and did not get it. When the patients go into an emergency situation, everything is on her shoulders. We really asked for a nephrologist, but we are asking now for at least a doctor,” said Cox.
“When a patient is on dialysis, all sorts of things can happen. You can have heart failure. Your blood pressure goes so low or so high that you need another doctor to help you, more than just the nurse,” she elaborated.
Jose Cruz, 40, a dialysis patient who lost both kidneys because they had become polycystic, knows of the crisis firsthand. His blood pressure went haywire three weeks ago, and it was the nurse in question, Nurse Maria Ake (Coc), who saved his life. He has been experiencing complications since, and stands to lose some of his toes, from a deteriorating condition, in the weeks ahead.
Carmela Cruz, 49, resident of Roaring Creek, Cayo, told our newspaper that February 2009 will mark once year since she has been taking dialysis treatments. She, too, is concerned about the lack of a doctor at the dialysis unit. “I know that it’s hard, because we don’t have a doctor. When our pressure goes up, God is the doctor. When my pressure goes up high I pray God please help me and I beg him because I don’t have any money for any doctor,” Cruz shared.
Patients fear that with Nurse Coc gone, things will get harder for them. “She will resign. I don’t know what will happen. Only she and God know what she is going through,” said Carmela Cruz.
Publicly and privately, the KAB and the dialysis patients are pleading with BHPL to resolve the concerns so that they can keep Nurse Coc, who patients say has gone above and beyond the call of duty in caring for them.
“We are asking that management reconsiders and come to amends with Nurse Coc,” says Jose Cruz. “That will only happen”, said Cruz, “if they at least give us a general practitioner. I know they are paying $40 a session to have a doctor examine us when they go on and off the machine. That’s $9,200 a month for a doctor we cannot see I am sure that if they pay a general practitioner some $3,500, they would be more than willing to see us.”
Advocacy by Cruz and his associates to have WORTH establish two dialysis centers in Cayo and Belize City has allegedly stoked tensions with BHPL’s management. Those sentiments notwithstanding, the new dialysis centers would be a welcome addition for struggling patients, such as Camela Cruz, who we introduced earlier.
“I really want it to reach at Belmopan Hospital…” said Cruz. “I feel frustrated because I come from so far. Finance is the problem.” She realizes that persons coming from the west and south (Cayo, Stann Creek and Toledo), would similarly want a closer dialysis center, where they can go for treatment.
Fighting back her tears, Ms. Cruz complains of having an extremely difficult time even affording the transportation expenses to get to Belize City for dialysis treatments three times a week. “Right now I neva know how I mi wah come todeh,” she said.
With the help of a Good Samaritan, she was able to make it down to BHPL’s dialysis center in Belize City on Friday for a routine dialysis session, which normally runs for three hours, from 11:00 a.m. to 2:00 p.m. Before WORTH, Government and BHPL had been discussing proposals for a new contract, multiple sources say.
The new proposal, claimed Jose Cruz, was supposed to cover a dietician, a nephrologist, a plate of food, a social worker, anerythropoietin injection to build the blood, and basic blood tests, in addition to the dialysis for $500 per person per session. That was tabled a year ago, in late 2008, but never implemented. Currently, the government pays $680 for only dialysis, Cruz said.
The WORTH project, still a proposal at this stage, is said to be designed to give over 80 patients a wider spectrum of care, including access to a dietician and nephrologist, as well as additional laboratory and pharmaceutical services for a nominal fee, subsidized by the Government of Belize. The BHPL arrangement with the government serves only 21 patients. If they need more care than the basic dialysis, or if they have a medical emergency, they have to find the money to pay for the additional expenses.
Since there is currently no nephrologist at the BHPL, Cruz is traveling this weekend to Guatemala City, where he will seek specialist care for his foot. “I have plaque and carbon deposits in my blood,” said Cruz. “I have had a lot of complications, but I am seeing Dr. [Victor] Lizarraga [at BHPL] out of the goodness of his heart. I know that cannot go on forever. I am scheduled to leave for Guatemala to get angiography, to see which capillaries are blocked to so they could put a graft and bypass it.”
Cox explained, “When [Jose Cruz] needed a doctor at the time when [his foot] started to get infected, she [the nurse] asked for a doctor and complained to management that she needed a doctor but could not get one.” Now, said Cox, doctors are telling Cruz he has to remove a part of his foot. “I’m gonna be having a toeless Christmas. It’s sad,” said Cruz, laughing it off to lighten the mood. He and his associates believe that had he gotten timely care, this might have been avoided.
The KAB’s central concern continues to be the absence of a doctor to adequately monitor the condition of patients. “That should be settled in a few weeks,” Collet Montejo, spokesperson for BHPL, told Amandala, when we asked him what the hospital is doing to address the concerns of patients.
Montejo told us that he understands the concerns of the KAB, and the hospital is putting a remedy in place. There was a “hitch and a tie up” with the government deciding whether they will work out a contract with the BHPL, said Montejo.
While Cruz claims that the current payment includes a fee for examination by a doctor, Montejo claimed that the fee was not in the original contract, but in the new agreement that they had been negotiating with the government, but which had not yet been finalized. The concerns of the KAB, said Montejo, should be resolved within a couple of weeks.
The dialysis advocates said they’ve heard that promise before, but appeal strongly to authorities this time around to take serious action to ensure that the 21 patients on the dialysis subsidy program get the care and attention they deserve and what government is paying for with taxpayer dollars.
Renal failure (from causes that extend beyond diabetes) is a leading medical concern in Belize, and patients have fallen to the ill fate of requiring dialysis for varied reasons. For example, Cox, first diagnosed with juvenile diabetes since age 8, had to undergo dialysis for six months before her brother donated a kidney, so that she could get a transplant in 2002.
Cox, who considers herself lucky to have gotten the transplant so soon, had later lost a toe on her right foot due to problems with circulation, and she said she has to spend the rest of her life on medication, being a type 1 diabetic, dependent on insulin to keep sugar levels in her blood at bay.
She said that she has been living with diabetes for 40 years, but even with the good care she takes of herself, began to have vision and later kidney problems, leading to her eventual kidney transplant.
“Living with diabetes with forty years—looks can be deceiving—but you go through a lot of ups and downs besides being on your diet and take your medications. And then after so many years of having diabetes, you start having complications, even when you try your best to keep it controlled,” said Cox, who also had to undergo laser surgery to save her eyes.
Were it not for her efforts to keep her diabetes controlled, she would not be alive today, Cox told us. Cruz is also grateful for the life-saving dialysis care she has been receiving: “The kidney does not work how it used to. What the kidney can’t do, the machine does.”
Her troubles started when she began to experience an unusual combination of nausea, vomiting and loose stools. The skin got darker and a doctor diagnosed her and warned her that because her kidneys were not functioning properly, due to a blockage, her blood was being poisoned. Dialysis was needed to cleanse her blood.
Jose Cruz (a father of six, and husband of Mileni Cruz, who stays by his side throughout his ordeals) lost both kidneys, which turned polycystic, three years ago. According to Cruz, it is a hereditary condition he got from his mother’s side of the family. Without dialysis, he would die.
Even though he is one of 21 patients currently on the government’s subsidy program, he is not content with the status quo and continues to appeal to those in authority to improve the care provided to patients, but moreover, to speedily establish dialysis centers in the public health care center where other patients who are badly in need of care would have access to this life-saving treatment.
He continues his appeal to the government to not only expedite the WORTH project, but to also assist in the resolution of the current conflict, which could see patients lose Nurse Coc – a woman they describe as a very dedicated and compassionate caregiver at BHPL.
Cruz told us Monday morning that he had just returned from Guatemala, where two of his toes were removed, because of the infection. Montejo informed Amandala this morning that BHPL has decided to bring in a nephrologist. According to Cox, BHPL’s part-owner, Dr. Muthugounder Venugopal (Dr. Vinny) had indicated to them Friday that the dialysis center would be shut down, and with Nurse Ack’s resignation, the closure would be expedited. However, Montejo indicated this morning that after discussions with government officials, they have decided to keep the center open.
Apart from the 21 patients in the government program, said Montejo, there are 5 to 10 private patients who use the center, apart from occasional Americans who come on cruise tours to Belize. Source: Amandala
I am Belizean and live in the USA while on vacation I did dialysis and wanted so much to do whatever I could to help,I have sent down some medication from time to time,but would love to do more,I have asked so many to help but as I am not empowered to do any outreach on the behalf of Belize I have been turned down,I do dialysis every Day at home while I sleep and have first hand knowledge of the hardship this illness can cause,So for now please know I keep you in my Prayers.