Yesli’s Story: Income Inequality, Mountainous Terrain and a Shortage of Specialists Hamper Diagnosis and Treatment of Rare Diseases in Chile

By Juan Ambar

June 20, 2017

Yesli Jordán Paillacán overcame a childhood
made difficult by an undiagnosed
primary immunodeficiency.

When we first met Yesli Jordán Paillacán, she was a shy young girl living in Araucanía, Chile’s poorest region in terms of gross domestic product per capita where 80 percent of the population depends on the public health system. Yesli’s life had been continually disrupted by frequent hospitalizations that typically lasted from five to 10 days, and by other health complications that dramatically affected her quality of life.

Access to care in rural areas
She could not attend school regularly, particularly in the winter, when weather conditions exacerbated her condition. Access to care for patients like Yesli in rural areas of Chile is complicated by the distances that often separate them from hospitals and health care centers. In rural areas patients must often travel over rugged mountainous terrain to receive medical treatment.

Yesli and her aunt traveled 40 miles by bus to reach the hospital in Santiago where she was regularly treated. While other little girls were building friendships and making memories, Yesli and her aunt, with whom she lived, struggled to maintain a sense of normalcy.

Income inequality
In addition to the distances between hospitals, access to care is further impeded by the income inequity between the “haves” and “have-nots” of Chile. Those who depend on public health often wait hours to see a doctor, several months to be seen by a specialist, and in some cases, years for surgery.

In Yesli’s case, her lung infections were often mistaken for symptoms associated with pollution…

In Yesli’s case, her lung infections were often mistaken for symptoms associated with pollution from Araucania’s lumber industry and treated with antibiotics. Her misdiagnosis was partly due to the shortage of specialists in Chile with experience in primary immunodeficiency (PI) disease.

All that began to change in 2012 when, during a hospitalization, Yesli was diagnosed with primary immunodeficiency disease. She was given intravenous immunoglobulin (IVIG) in addition to antibiotics and responded favorably. She received IVIG treatment from 2012 to 2016, traveling to the hospital one to two days each month to be infused with immunoglobulin (Ig). For the first time, she enjoyed a greater level of normalcy than she had never known. Little did she know things could get even better.

Yesli traveled 80 miles roundtrip by bus each time she needed
to be treated at Temuco regional hospital.

Transformational medicine
In 2016, the hospital in Temuco learned that a subcutaneous immunoglobulin (SCIG) treatment was available, which would allow patients like Yesli to self-administer the medicine at home rather than traveling to the hospital each month.  The hospital purchased enough medicine for four patients to receive therapy for one year.  Yesli was one of them.  Since then, SCIG has had a very positive impact on her quality of life. The ability to dose in one’s home is transformational.

Treating her condition without having to travel to the hospital, Yesli says she feels “better than ever,” and has not needed treatment with antibiotics or hospitalization. Today, Yesli lives in the city of Temuco, her future full of promise – including a baby on the way!

Opening the minds of decision-makers
While Yesli’s story has a happy ending, it is still difficult to find specialists in Chile who understand rare diseases such as PI. And it is even more difficult for those specialists to convince the decision-makers in the Chilean health system to try new therapeutic options.

The ability to dose in one’s home is transformational. 

Stories like Yesli’s reinforce our commitment to keeping our promise to save lives and protect the health of people stricken with a broad range of serious and chronic medical conditions. This means more than developing new therapies. It also means ensuring that we make our therapies available to people who need them most.

###

Juan Ambar is General Manager of CSL Behring SpA in Chile

Share

Leave a Reply

Posts represent the opinion of the author and do not necessarily reflect the views of CSL Behring.
This site is not intended as a forum for discussing CSL Behring or other companies' products.
Comments on this blog may be reviewed by CSL Behring and may be subject to removal if they are deemed to have inappropriate content.