Fresno resident and dialysis patient Irene Botello couldn’t be there in person, but her story was shared last month on April 5 as dialysis patients, community leaders and healthcare workers submitted thousands of voter signatures to Fresno County election officials to qualify a statewide ballot initiative to improve patient care in dialysis clinics.
Similar events were held that day in Los Angeles, San Francisco and Sacramento. Statewide, more than 600,000 signatures will be turned into nearly every county in California, far more than the 365,880 needed to qualify for the ballot.
On April 5, Botello was in the hospital fighting for her life when voter signatures were delivered in Fresno.
The Fair Pricing for Dialysis Act, which would appear on the Nov. 6, 2018 ballot, limits dialysis corporations’ revenues to 15 percent above the amount they spend on patient care. It will push the corporations to invest more of their profits in patient care through hiring more staff, buying new equipment, or improving facilities.
Sadly, 21 days after the signatures were submitted, Botello, 35, died on April 26 at Fresno Community Hospital from complications due to chronic kidney disease, including bleeding on the brain. Botello had been at Fresno Community Hospital since February and despite her health issue she continued fighting to improve dialysis for patients and workers.
According to the U.S. Renal Data System, 66,000 Californians with kidney failure get life-saving treatment in dialysis clinics.
People with kidney failure must undergo dialysis treatment three days a week at clinics to remove their blood, clean it, and put it back in their bodies. Each treatment lasts three to four hours
She is survived by her husband, her 8-year-old daughter and her 5-year-old daughter.
Botello was an activist in the effort to improve patient care in California dialysis clinics.
Her failing health prevented Botello from participating as much as she would have like to, and as often as she had in the past, but she did continue fighting to the end.
Even while Botello was in the hospital, she signed a form granting permission to share her story for April 5, filing signatures for the statewide dialysis ballot initiative, but was unable to make it to the event.
Botello, who had Type 1 diabetes, had been in dialysis since October of 2016.
“She had only started dialysis in 2016 and her death illustrates how much of a toll the exhausting process - going three days a week for 3-4 hours per treatment- takes on a patient’s body,” said Sean Wherley, Media Relations with SEIU-United Healthcare Workers West. “She knew how important the struggle to improve dialysis pate care was even if she wouldn’t live to see those improvements.”
Botello, who was born in Fresno and raised in Mendota, was diagnosed with Type 1 diabetes when she was about 10 years old and lived with the disease for approximately 25 years.
Botello, who moved back to Fresno in 2008, said that when she was diagnosed with chronic kidney disease it was already on stage 4 which leads to the need for dialysis.
“It got worse,” said Botello, during an interview with Vida en el Valle in August of 2017.
Being on dialysis was not easy for Botello who had to go to a dialysis clinic in Fresno three times a week - Monday, Wednesday and Fridays.
Dialysis is a life-saving procedure that removes a patient’s blood, cleans it, and then puts it back in his or her body. Patients must go to a clinic three days a week, for three to four hours each time.
After each dialysis session, Botello told Vida that she would come home and rest since for her it was very debilitating going on dialysis.
“I am here. I don’t get to do much,” Botello said of feeling anxiety and stressed about her health situation.
As a dialysis patient, Botello said she feels the dialysis clinic is understaffed and there are not enough workers to take care of the patients like her.
Botello recalled one incident when she needed to go to the bathroom while she was attached to the dialysis machine and because the clinic was understaffed, the workers didn’t get to get on time to take her to the restroom, having an bathroom accident right there in her chair.
To prevent situations like the one Botello experienced in the future, advocates for dialysis patient care filed last summer the ballot initiative, the Kidney Dialysis Patient Protection Act, for the November 2018 election in California, which would require annual inspections of dialysis clinics in California; Require safer staffing levels at dialysis clinics in California; Require more recovery time for patients at dialysis clinics in California; and limit the amount dialysis patients may be charged for care in California.
This ballot initiative seeks to improve patient care by placing minimum safety requirements on the 570 dialysis clinics in the state and limiting the amount dialysis companies can charge patients.
The ballot initiative was being pursued while a related bill - SB 349, The Dialysis Patient Safety Act.
Last May, Botello attended a rally in Sacramento in support of SB 349 to improve patient care, and safety at dialysis clinics in California and staffing at 572 dialysis clinics in California.
“We are not snitches,” said Botello told Vida of supporting the SB 349, adding the bill benefit not only patients but also workers. “We don’t want to get anyone in trouble.”