After bruising her shoulder from a fall in the spring of 2009, Ayse Sule Sevin, a native of Turkey, noticed that the bruise was not going away. She visited a doctor in hopes of finding out what was wrong, but the doctor was unable to determine the problem. A few months later, Sevin began experiencing chest pain and bleeding gums. Although her doctor prescribed medications to treat these symptoms, her problems continued to worsen. Finally, in October 2009, doctors diagnosed the then 64-year-old Sevin with stage 2 multiple myeloma.

At Istanbul University, Sevin’s physician chose treatment with 12 rounds of vincristine, doxorubicin (Adriamycin), and dexamethasone (Decadron), a standard treatment that is commonly known as VAD.

Recent studies have shown that treatment with novel therapeutic agents increases the rate of response and survival for newly diagnosed myeloma patients. However, Sevin was limited to VAD treatment because the Istanbul University hospital provides standard treatment for all multiple myeloma patients, starting with the lowest cost therapies. To receive other treatments, she would need to pay the full costs herself.

Sevin’s son, Ali Arsan, who has lived in the United States since 1996, spent more than three months in Turkey caring for his mother. “The health care system in Turkey does not yet personalize health care,” he explained. “In Istanbul University, everyone gets the same lowest cost treatment of VAD, and doctors will start to beef up the treatment only if there is no response. That is the worst thing you can do for multiple myeloma.”

Frustrated by their inability to acquire better treatments for their mother, Arsan and his brother decided to consult Dr. San Miguel at the University of Salamanca in Spain on how to proceed. Dr. San Miguel recommended that Sevin visit doctors in Ankara, the capital of Turkey, a one-hour flight from Sevin’s home in Istanbul.

While in Ankara, Sevin’s doctors reread her medical file and discovered that her high calcium and protein levels suggested that she had asymptomatic multiple myeloma for five years before she began experiencing symptoms in 2009. “She was sick for five years, but nobody could put this stuff together,” said Arsan. “I was amazed over the past five years at how quickly my mom aged.”

The doctors in Ankara suggested that Sevin undergo an autologous stem cell transplant. She underwent three rounds of Velcade (bortezomib) with prednisone for induction therapy to prepare for the transplant. Unfortunately, her first stem cell collection attempt was unsuccessful; not enough stem cells were collected.

After the unsuccessful collection, Sevin’s doctor mentioned Mozobil (plerixafor), which boosts stem cell collection in patients. However, Mozobil was not yet approved by the Turkish government and would have cost approximately €15,000 ($21,000). So, Arsan purchased the drug for his mother in the U.S., where it costs less, in hopes of a more successful second stem cell collection.

Sevin’s second collection attempt was more successful, but still disappointing. She hoped to collect enough stem cells for two transplants, in case her physicians decided to do a second transplant later, but they only collected enough for one transplant due to a nurse’s error.

Following the stem cell transplant, Sevin’s immune system was highly compromised, so she needed to remain isolated for twenty days. During this time, her two sons cared for her. Arsan found that he and his brother needed to personally attend to many aspects of his mother’s health care, which, in the U.S., are normally taken care of by the health care system.

“Turkey has a dual health care system, a private insurance market and a government-run system. For high-cost illnesses such as cancer, most people choose the government-run system, as the government covers most costs, despite being a poor country,” said Arsan as he described most hospitals’ lack of resources.

When his mother needed a blood donation, he and his brother needed to personally locate blood donors and bring them to the hospital. The hospitals also did not have a large supply of medications on hand—if his mother needed medications, he or his brother needed to obtain them from a pharmacy. Even though the country transitioned to electronic records two years ago, the system still requires physical paper documents. So, Arsan and his brother were responsible for physically bringing papers from department to department.

Despite these difficulties, Sevin’s transplant was successful. Although she is not currently being treated, she will most likely receive three rounds of Velcade, Revlimid (lenalidomide), and dexamethasone maintenance therapy in the near future. Arsan hopes that she will be able to collect another round of stem cells next spring, in case a second transplant would be beneficial, and to follow up with Revlimid maintenance therapy.

Although Arsan describes the Turkish health care system as “old-school,” he admits that there are some positive aspects to a centralized system. Revlimid, which was only approved for myeloma treatment in Turkey within the last month, and Velcade are, like VAD treatment, paid for in full by the Turkish government. He indicated that an important aspect of the Turkish health care system is that new drugs and procedures are approved surprisingly quickly. Regardless, if a patient does not have access to doctors who are informed about the newest approvals, receiving the best treatments possible can be difficult.

Arsan explained that receiving the best health care in Turkey requires “finding the right doctors” and learning as much about the disease as possible. Through diligent research and the use of financial resources, Arsan and his brother were able to ensure that their mother received state-of-the-art treatments. However, he admitted that not all myeloma patients in Turkey are as fortunate as his mother. “There are no resources available if you don’t know English or if you don’t have access to the web,” said Arsan.

In response to their experience with the Turkish health care system, Arsan and his brother are founding the Turkish Multiple Myeloma Organization. “There is currently no structure to create system-wide awareness,” said Arsan. In an effort to change the way government health care currently treats multiple myeloma, Arsan and his brother have also started to create pressure groups in Turkey. “It’s up to the government to start doing personalized medicine everywhere, especially for multiple myeloma,” he said.

Arsan also noted that support groups do not yet exist in Turkey. So, he and his brother have created an informal myeloma support group for their mother by connecting her to three other myeloma patients.

After experiencing the difficulties of dealing with a foreign, centralized health care system, Arsan has plenty of advice for others in similar situations: “Educate yourself as much as possible and translate information into your native language. You need a lot of knowledge to be successful with this disease. The more knowledge, the better.”