Cancer abroad: A St. Louis perspective
This article first appeared in the St. Louis Beacon, May 14, 2012 - As a St. Louisan living in a country where health care is run by the government, I have experienced personally the differences between the two systems.
Some readers of the Beacon may remember a story I wrote two years ago about two visits I had to the emergency room in the space of a few months, one ER trip in St. Louis and another in Ireland, where my family and I have lived for the past three and a half years.
These visits exposed striking differences between the health care in both places. The outcomes for me were positive in both cases: I received good care and healed well after both my injuries. The Irish system delivered this outcome at a fraction of the cost, albeit with a creaking infrastructure. However, my belief in government-run, public health care would soon be tested.
In March 2011, our then two-year old son, Eoin, became unwell. For ten days or so, my husband and I believed that Eoin had a flu virus that would pass. He had almost never been sick, so we assumed that his five-year old brother had brought home a virus from school.
Since becoming sick, Eoin had stopped walking and was very lethargic, so we took him to our family doctor in Ireland, who could find nothing serious. After another week, Eoin was still very pale and lethargic. I brought him back to the doctor, who, while not overly alarmed, decided to send us to our local hospital’s emergency room for blood tests.
Within hours of arriving at the hospital, the pediatrician had given me Eoin’s diagnosis: Acute Lymphoblastic Leukemia (ALL). According to the Leukemia and Lymphoma Society’s Facts 2012 publication, leukemia is responsible for almost one-third of all cancer deaths in children under 15 years in the U.S.
Of children diagnosed with leukemia, ALL is the most common form, with almost 3,800 children in the U.S. diagnosed last year. It is a disease that is more common in boys than girls, although the reasons for this are not fully understood. The one positive for ALL is its five-year survival rate: 90.5 percent for children under 15 years and 91.5 percent for children under 5 years, according Facts 2012.
Of course, at the time of Eoin’s diagnosis, I knew none of these statistics.
My gut reaction when the pediatrician began to tell me about what would happen next for Eoin was shock, followed by panic. I thought, surely Eoin could receive the highest-quality treatment only in the U.S.
The pediatrician was quick to assure me that the treatment Eoin would receive would be identical to that in the U.S., as Ireland followed the same treatment protocol.
I believed, as do many Americans, that the U.S. is the best place to be sick, as it has all the top physicians working in world-leading institutions, with all the best medicines developed by the world’s top researchers. Having several doctors in my family, I had even heard stories about people traveling to the U.S. for cancer treatment.
Yet, at this time of crisis for our family, the pediatrician’s assured demeanor and ability to clearly articulate Eoin’s next steps quickly assuaged these concerns and enabled me to believe that Eoin would receive treatment as good as that in the U.S.
Within hours of diagnosis, Eoin’s treatment was in motion. Eoin was to be transferred from our local hospital (45 minutes away from our home) to the national children’s hospital in Dublin, a “centre of excellence,” where all Irish children with leukemia and cancer are treated.
The centre of excellence model was adopted about 10 years ago with the purpose of centralizing treatment to ensure that all the country’s best specialist doctors were in one place, so that all Irish patients could have access to the country’s best facilities and doctors. As a result, serious illnesses are treated in larger, national hospitals where there is an entire department of specialists, freeing up regional hospitals to focus on accident and emergency care and community health.
As parents, having only one pediatric hematology/oncology department in Ireland meant there were no decisions to be made about what doctor or which hospital should treat Eoin. If we lived in St. Louis, we would have had some daunting choices to make after diagnosis — which hospital has the best facilities, Mercy Hospital, Children’s Hospital, or Cardinal Glennon? Which hospital has the best doctors treating ALL? How does one even define these things? Where does one find this information during a time of crisis?
In retrospect, I am relieved that I didn’t have to research any of these things. I found reassurance in being “led by the hand” and told where to go and what to do. Knowing that Eoin’s treatment protocol was well-established in Ireland was one less thing for me to worry about.
On the day after diagnosis, Eoin was admitted to the children’s hospital to begin treatment. We moved into the hospital room with him for almost three weeks. These quarters were far from comfortable. Each night, my husband or I rolled out a camp bed from a storage area and slept at his bedside. Nurses came and went during the night, ensuring that there was never restful sleep. In addition, we shared a room with another newly diagnosed child and her parents, so there was no privacy or physical space to cope with the daunting diagnosis.
When not sleeping next to Eoin, I slept in parents’ quarters in the hospital, which were previously the living quarters for the nuns who had run the hospital. Although sparse and bare, this space provided some respite from the intensity of the hematology/oncology ward. This contrasts greatly with the majority of cancer centers in the U.S.; if Eoin had been treated at Mercy Hospital, which would have been closest to our former home in St. Louis, and a hospital with which we already were familiar, he would have had his own room where we could both stay every night.
A private room would have allowed us to shut out some of the horrors of the cancer ward. But sharing a room with another child and her family enabled us to find support from another family going through treatment.
A day after Eoin began treatment, one of the social workers attached to the hematology/oncology department came to visit us. She arrived with application forms for several benefits available to our family due to Eoin’s leukemia. One benefit for which we were eligible was a Carer’s Allowance of €300 per month (approximately $400) for the duration of his treatment, plus a respite grant of €1,800 (about $2,400) for each of the three years of his treatment, which could be used in any way that would provide us assistance.
The most important benefit for which we were now eligible was a Medical Card. The Medical Card can be most closely compared to Medicaid or Medicare in the U.S. In Ireland, the Medical Card covers medical costs for the unemployed, elderly and those below a certain income threshold. Also, individuals with serious and long-term illnesses such as Eoin qualify for a Medical Card for the duration of their treatment.
As a result, my husband and I don’t pay for any of Eoin’s hospital visits for chemotherapy, his operating room visits, or stays in hospital due to infection or illness. Having the Medical Card also means that we pay only a nominal charge of about 50 cents each time we have a prescription filled for one of his medicines, regardless of the price of the medicine.
In fact, we have no bills associated with Eoin’s treatment. Once I informed the national hospital (where he has chemotherapy) and our local hospital (where he is treated for infection or illness) of Eoin’s Medical Card, we never received another bill.
Now that Eoin has finished his induction and consolidation treatment and is in the less-demanding two and a half year-long maintenance chemotherapy, I have had the opportunity to step back to assess how the Irish system has performed for Eoin and for us.
In my opinion, the single biggest advantage to going through Eoin’s leukemia treatment in Ireland, rather than in St. Louis or elsewhere in the U.S., has been the government-run system.
The Health Service in Ireland has many failings, especially in cases that are not a medical emergency. The National Treatment Purchase Fund, which is responsible for tracking waiting times for non-emergency surgical and medical procedures, found that over 18,000 patients in Ireland in 2010 were waiting longer than three months for surgical or medical procedures, ranging from tonsillectomies to knee replacements to endoscopies.
In addition, nine of the top 10 pediatric surgical procedures had an average wait time of 2-5 months. Newspapers in Ireland such as The Irish Times, frequently feature articles about long waits in emergency departments, and such stories are commonplace in public discourse.
Despite its flaws, the Irish health care system has surpassed our expectations at a time of crisis, when we had no choice but to rely on it. Its model of providing a social safety net for children with cancer has enabled us to focus on Eoin’s health, rather than worrying about the cost of the treatment or what our insurance premium will be like when he has finished treatment.
Of course, there are some costs associated with Eoin’s leukemia treatment (e.g., the extra expense of fuel for our car, of which only a portion can be claimed back), but we have not had the financial pressure we may have had living in St. Louis. I spoke to a mother in Florida whose child recently completed her treatment for ALL. Although her family has an HMO plan through her husband’s large employer, she said they have paid, on average, $2,000 per year for each of the three years of her daughter’s treatment.
The costs may have been greater, she said, were it not for the amount of time she and her insurance company’s nurse advocate spent seeking reductions in charges from hospitals and doctors. None of these issues have been a factor for me, leaving me with more energy for Eoin and my other son, Tomás.
Eoin’s odds of being cured would be very good had he been treated for ALL in the U.S. As the hematology/oncology team in Ireland follows the exact same treatment protocol as Mercy Hospital St. Louis, Cardinal Glennon or Children’s Hospital, his chances of being leukemia-free in five years are just as high. If we lived in St. Louis, the financial pressure from the treatment would have been great. But in Ireland, we have been able to focus on giving Eoin the best chance of being cured without any financial worries.
For more information about Acute Lymphoblastic Leukemia, please visit the Leukemia and Lymphoma Society website. There you can find statistics, guides, and information on financial assistance available to families affected by blood cancers.