"What have I got to lose?": An analysis of stem cell therapy patients' blogs.

• Author: Rachul, Christen

Introduction

The promises of stem cell research have provided hope to those who suffer from a variety of diseases and conditions, but to date, there are very few proven therapies that involve stem cells. (1) However, a growing number of clinics around the globe have begun offering stem cell treatments for a wide range of conditions. While it is difficult to know exact numbers, previous studies have suggested that possibly thousands of people travel abroad every year to receive stem cell therapy for a vast array of conditions, and all at a hefty cost. (2)

This growing phenomenon has been dubbed "stem cell tourism", equating it with other forms of medical tourism that marry facelifts and beach vacations. This terminology has been criticized for ignoring the often serious and desperate conditions in which many stem cell therapy patients find themselves. (3) Whatever the name, these unproven stem cell therapies have provided hope for many and drawn criticism from the scientific community as well as many others. (4)

Much of the criticism is based on the lack of evidence gathered through clinical trials regarding the safety and efficacy of these treatments. (5) Also, a lack of transparency in treatment protocols at the clinics and no apparent post-treatment follow-up has raised concerns about the adverse effects and risks of the treatment. (6) Other issues have been raised including the lack of true informed consent (7) and vulnerable people {including children) being taken advantage of or put at risk, (8) to name a few.

Due to this lack of transparency on the part of these clinics it is also difficult to assess how many people are pursuing treatment, where they are going, why they are going, and what their experiences are during treatment and recovery. Personal blogs, written by patients or their caregivers, provide a unique method for gaining an understanding into the motivations for pursuing treatment and the actual experiences of preparing for and undergoing stem cell therapies abroad. (9)

Methods

In order to gain more insight into patients and/or their caregivers who choose to pursue unproven stem cell therapies in overseas clinics, we conducted a thematic analysis of publicly available blogs written either by patients or their caregivers who plan on, are in the midst of, or have received stem cell therapy at an overseas clinic. Personal blogs were collected using the Google Blog Search engine with the following search terms: stem cell treatment or stem cell therapy, as well as travel, overseas, abroad, tourism, or variations of these terms (e.g., travel or traveling). No date restrictions were used and the search was restricted to English-language blogs only.

Some of the stem cell clinics host patient blogs on the clinic website to help promote the success of their therapies; however, we excluded these blogs from our sample so as to limit the chances of bias presented in the data. In total, we collected a sample of 30 blogs, which included the experiences of 32 patients.

Two researchers conducted an initial analysis of a random sample of 10 blogs. Each researcher analyzed 5 blogs independently by collecting patient demographic information, writing notes about patients' reasons for pursuing treatment, experiences at the clinic and during recovery, as well as any other information relevant to the patient experience with stem cell therapy. From these notes, the researchers developed a list of common themes from across the blogs. The researchers' lists of themes were then compared, and a list of 7 themes based on both of the analyses was compiled. One of the researchers then analyzed the remaining 20 blogs, adding to the list of themes for a total of 10 themes.

Findings

Demographics

The purpose of this study was not to construct a complete picture of the range of patients that pursue stem cell therapy abroad. (10) However, the demographics of the patients presented in the blogs bears some consideration. As previously mentioned, there were 32 patients aged 7 months to 65 years old when the last blog entry was analyzed. There were 17 adults (53%) and 15 minors (47%). Patients were from five different countries; US (24), Canada (4), Australia (2), UK (1), and Brazil (1). Patients were pursuing treatment for 13 different diseases with the majority of patients having Multiple Sclerosis (MS) (6) or a brain injury or damage (5). Other diseases included Multiple System Atrophy (MSA) (3), Cerebral Palsy (3), Batten Disease (3), Amyotrophic Lateral Sclerosis (ALS) (3), Spino-cerebellar Ataxia (2), Optic Nerve Hypoplasia (1), Muscular Dystrophy (1), Cancer (I), Glut-1 Deficiency (1), and Arterio-Venous Malformation (AVM) (1). Two patients also had undiagnosed diseases, possibly Lyme disease and autism. (11)

Patients had either traveled to, were currently in, or planning on pursuing treatment in 8 different countries. One patient was only in the planning stages and had not yet chosen a clinic for treatment. As is consistent with previous studies (12) the most popular destination was China (17), followed by Costa Rica (4), Germany (3), India (2), Israel (2), Dominican Republic (I), South Korea (I), and Mexico (1).

The cost of the treatment was mentioned in only 10 of the blogs, which ranged from $ 10,000US to $ 150,000US (this being the total for 3 trips over 1 year). The average cost was approximately $48,000US. Patients or caregivers that mentioned cost either did extensive...