Putting a price on life

Health reforms will leave many patients unable to afford vital treatments "It's a matter of life and death that has a price we can't afford," says one father

Chaouki Smaali discovered he was HIV positive in 1996.
Chaouki Smaali discovered he was HIV positive in 1996.JORDI VICENT (EL PAÍS)

An illegal immigrant sick with cancer who will no longer receive radiotherapy and chemotherapy. A man with a spinal cord injury who will have to pay for part of his wheelchair and the ambulance that takes him to receive treatment several times a week. A stroke victim who will have to pay for a percentage of the nutritional preparations they receive by catheter.

These are all people with names and faces who will no longer be able to receive standard medical attention or will have problems continuing their medical treatment as a consequence of the government's planned health reforms.

Arguing that the current national health system is unsustainable, the government has begun a counter-reformation. It is the inverse of the process put in motion 26 years ago by Socialist minister Ernest Lluch that created the current system and universalized healthcare, increasing coverage to eight million people who until then had remained outside its protective umbrella.

The new system, which the government hopes will save 7.2 billion euros, will restrict health-care access for Spain's 153,000 illegal immigrants to emergency treatment only; create a new co-payment system for pharmaceuticals (which will mean, for example, that for the first time pensioners will have to pay for their medicines); and also includes payment plans for the lending of ortho-prosthetic items such as wheelchairs and for nutrition therapy preparations that many patients need to survive.

"It is a matter of life or death that has a price we cannot afford," says Andrés Piñero, whose daughters, eight-year-old Paula and 14-year-old Marta, both suffer from phenylketonuria (PKU), a congenital disorder that prevents them from metabolizing proteins from food. The girls can only eat certain fruits and vegetables and need nutrition therapy preparations to provide them with calcium, magnesium and other essential nutrients. These cost around 2,000 euros a month - more than 22,000 euros per year, per child.

Until now, Piñero and his wife, María José Godoy, paid nothing for these products, which were covered by the national health system. Now the government decree is establishing a progressive co-payment system for the preparations according to income.

Godoy is unemployed and Piñero only brings in 1,000 euros a month as a salesman, which is nowhere near the 1,600 euros per month Paula and Marta's treatments could cost them if, in the end, they have to pay 40 percent of the cost.

The situation of this Seville family is not unique. Around 700 people suffer from PKU in Spain, but the measure also affects the majority of those with metabolic disorders, as well as cancer patients, people who can only receive food via catheter and old people who have difficulty chewing and swallowing, all of whom need nutrition therapy treatments to survive.

It is the inverse of the process that made healthcare universal in 1986

Fernando Sojo, president of the Andalusia Metabolic Illnesses Association, predicts that if the measure is not corrected, many families will be forced to reduce treatments. "In a few years we will see children with neurological diseases because their parents couldn't pay for the formulas," he says.

At the moment the government decree does not include any exception for this kind of illness, nor for other kinds of rare diseases. A Health Ministry spokesman explains that it needs to develop the rules governing the reform, but it hasn't yet studied cases such as that of this family.

Another casualty of the reform will be medical transport. After two transplants and three decades with "stopped" kidneys, Joan Surià, a 70-year-old Barcelona pensioner, survives thanks to the non-emergency medical transport that takes him for dialysis treatment three times a week.

"When I felt fine I used to go alone, but the dialysis gets tougher and tougher and you reach the point at which it attacks you a lot," he says. "The medical transport ends up being absolutely essential for almost everyone." He says he has nothing left for transport after paying for prescriptions and medicine with his 730-euro monthly pension.

Surià believes the succession of public health cuts and taxes planned by the central and Catalan regional government have done harm to the weakest people. "We are like a dog being attacked by all the fleas," he says. "It is unfair, I didn't work and make [social security] payments for 14 years to reach this point."

"I can't pay for HIV pills"


Chaouki Smaali, 40 on Tuesday, found out he was HIV positive in 1996 - "because of a woman," he says, without offering more details. Back then he was doing well installing air-conditioning systems. Now, while he also tries to give up heroin, there is nothing but odd jobs. His wife and two children have gone to live with his in-laws and he doesn't even have enough for a "cup of coffee."

But his problems don't stop there, as from August 31, Tunisian-born Smaali will no longer have access to the expensive medicines (850 euros a month) that stop the virus from spreading and leaving his immune system defenseless.

With no exceptions yet introduced, the government's health reforms mean from September all immigrants who are either "non-registered or not authorized as residents in Spain" will be left without a public health card - around 153,000 people. The only coverage they will be entitled to is emergency treatment.

"I'm left in the lurch," says Smaali, who after 20 years in Valencia is still without papers. "I need the pills and I cannot pay for the treatment. I am very worried."

Only public hospital pharmacies dispense the drugs that Smaali takes every day to survive and there is no other channel that allows access to them, even for those with money.

"It is barbaric to prevent people from accessing treatment," says Enrique Ortega, president of the Spanish Interdisciplinary Aids Society. "Not just thinking about the patient, but also in terms of public health; if we keep the viral load down with drugs, we stop the infection from spreading."

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