A Mother's Journey Spans Continents

Martha Gonzalez Hopes to Persuade Ecuadorean Officials to Recognize PH

Martha Gonzalez with medical professionals 

Imagine that your son was born with not one but two life-threatening congenital diseases, then was diagnosed with pulmonary hypertension when he was only a year old.

Martha Gonzalez knows this scenario only too well. Her son, Daniel Torres, has been living with these life threatening conditions for over five years.

Martha has lived in the U.S. for more than 20 years, and now she is using her son’s example and all that she has learned about PH over the past five years to help other people in her native Ecuador. She is trying to convince officials in that country to add PH to the list of “catastrophic illnesses” for which the government-funded healthcare system will subsidize treatment.

Daniel received an early diagnosis of congenital heart disease during Martha’s pregnancy and was born in 2005 at Columbia Presbyterian Hospital in Manhattan.

Daniel also suffered from biliary atresia, an incurable, rare congenital liver disease caused by a blockage in the ducts that carry bile from the liver to the gall bladder. He underwent a liver transplant to reverse the damage when he was 6 months old.

Medical professional 

Then, after a month of testing when he was 1 year old, Daniel was diagnosed with PH at Children’s Hospital of Philadelphia — a two-hour, nearly 100-mile trip from the family’s home in North Bergen, N.J.

By the age of 5, Daniel had undergone a total of six major surgeries, including two open-heart surgeries. Martha and the rest of the family — Daniel’s father Carlos; brother Sergio, 19; and sister Mia, 4 — were devastated at first.

“When we heard about PH, the only word that kept repeating in my mind was ‘incurable,’ since Daniel had the liver transplant to cure his liver disease,” Martha says. “I knew how hard those moments were for us. I felt so hopeless at that time to know that he had to fight another incurable disease at his young age. It was a very fearful time for our family.”

Turning fear into action

When Daniel was diagnosed, rather than become immobilized by self-pity, the family met the challenges head-on and completely changed their way of life to become Daniel’s caregivers and closest allies.

“My husband Carlos took a night job so he is available during the day for any emergency,” Martha explains. “He also studied to become an emergency medical technician so he could be prepared to help Daniel in any case of emergency.”

“We as a family have become closer than ever,” Martha says. For example, “when we go to clinic, my oldest son Sergio takes care of my youngest, Mia. Sergio is considered a third caregiver of Daniel — knowing all about PH, always asking about it. He also knows the doses of his medications and schedule.”

Martha has maintained close ties with friends and family in Ecuador as well, which led her to launch a campaign to educate physicians about PH in that country.

“My involvement with the Ecuador government is related to an awareness project that I have planned with countries in South America,” Martha says. “I began with Ecuador because I am originally from there.”

The Ecuadorean embassy helped to arrange a visit in May with the directors of cardiology at Hospital Clinica Kennedy, Hospital Pediatrico Leon Becerra, and Hospital de Niños Dr. Roberto Gilbert Elizalde.

“Groups of physicians invited me to sit with them in rounds, during diagnosis of patients, and also showed me their advanced cath labs,” Martha says.

During those meetings, she was able to give the physicians informational material in Spanish regarding the disease. PHA provided her with material such as Pulmonary Hypertension: A Patient's Survival Guide, the medical journal Advances in Pulmonary Hypertension and information on the international seed grant program.

“My impression was that all these physicians were very interested in PH,” she says. “Although some had heard of it, one hospital never had any case of it. In the pediatric centers, my visit coincided with the recent diagnosis of two children with PH.”

Martha adds that she is pleased with the response of the physicians she visited, who are interested in coming to PHA’s 2012 International PH Conference and getting actively involved in the PH journey.

Obstacles along the way

Martha says she was “amazed” to discover that the only PH drug administered in Ecuador is sildenafil. As she began working to change government policy by communicating with Ecuadorean health officials, Martha encountered a number of obstacles.

“I did my research and found that there was a list of catastrophic illnesses in Ecuador that included heart malformation and cardiac valve disease,” she recalls. “I called and emailed the authorities to inquire if PH could be included in this list, and they said only if the cardiac malformation causes PH at some point, as if it was secondary PH. I specifically asked what if it is genetic PH, and the answer was no. This disappointed me because if all cancers were included in this list, then why not PH? PH is incurable and, without treatment, is fatal.”

She presented the example that if a person was born with no heart malformation and developed cancer later in life, treatment of the illness could be subsidized by the government. However, if a person was born with no heart malformation and 20 years later developed PH due to a mutation of one of his genes, then why could this person’s care not be subsidized?

Martha is currently working with PHA on how best to approach the medical establishment and win the battle so PH can be included in this list.

“My goal is to put the word out there, be a mom ‘on the road,’” she says. “I will fight for my own country’s PH patients, and after that, I would love to move on to the rest of the countries in South America. I believe that the only way to have subsidized help for the expensive therapies for PH is by including PH in the catastrophic illnesses lists of these countries, especially in healthcare systems funded by governments.”

PHA is fighting right alongside Martha in her efforts, targeting many of its education and awareness efforts to a global audience of medical professionals. Worldwide, PHA distributes 44,000 copies of Advances in Pulmonary Hypertension, a medical journal put together by leaders in the PH field, to cardiologists, pulmonologists, rheumatologists and other healthcare professionals. It also offers online resources such as PHA Online University, which is an educational resource for healthcare professionals interested in learning about the latest information in the field of PH.

Hope for a cure

Martha says that even though her son Daniel is just beginning to comprehend what’s going on with his health, she is thankful for their private insurance and the daily medications that allow him to be just like any other 5-year-old boy who loves to run, jump, swim, play Wii and watch SpongeBob SquarePants. She wants people in other countries to experience this same care.

“We enjoy every day with Daniel,” she says. “We feel we are blessed to have found a great PH pediatric center and PHA. We feel that PHA is our security blanket; if we have any questions, we just call PHA and there is always help there for us. Not all is bad for us. PH has brought out the best of us as human beings. We no longer feel hopeless, we now feel hopeful for the cure.”

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.