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During a recent weekend, I spent some time with a visiting poet and author, Aurora Levins Morales. A native Puerto Rican, she spent quite a bit of time in Cuba as a child, but now calls the San Francisco Bay area her home. In 2017, Aurora suffered a stroke after several previous head injuries, and underwent rehabilitation in Cuba. When Aurora described the care she received in Cuba, and the laws regarding care of people with disabilities, I almost cried! It was so superior to what we have in the USA. Health Advocates spend so much of our time trying to figure out how to get the best services for our clients, services that should be available to all. I decided I had to write about it. Naturally, the story is a bit more complex than the rosy view I imagined. The Cuban Constitution guarantees protections for workers who have a disability, illness, or just due to advancing age. In the case of their death, those same protections apply to their family. The state protects “through social assistance, the elderly without resources or shelter, and any personnel unfit for work who lack family members in conditions to render assistance”. There are laws guaranteeing a safe workplace, medical care, subsidies, and retirement in case of temporary or permanent disability. The free medical care for all in Cuba is legendary. Cuba has the best health care in any Latin American country. Their infant mortality rate is better than ours, and despite the negatives, they have a similar life expectancy to us in the US. The negatives cannot be ignored, however. There is crumbling infrastructure, poorly paid doctors, and the system is further stretched by doctors who are sent throughout Latin America, where they can make better pay, leaving those at home to work harder for less money. And, despite the glowing Cuban Constitution, life for those with disabilities is not so good. Although the Cuban State guarantees the right to free education without discrimination, there is no educational policy nor laws designed to protect people with differing abilities. According to official figures, approximately 3% of the Cuban population lives with some limitation that keeps them from participating in the labor market, and as a result, they cannot access the funds to confront the many obstacles they face in life. Though we enjoy some benefits, persons with severe disabilities often feel neglected and marginalized when it comes to this issue. Our limitations also make it more difficult for us to find a solution to the problem. Even more disturbing is the rise of medical tourism where foreigners see a completely different medical system than most Cubans do. Cuba, despite its famed legions of highly trained doctors, is no health-care paradise. Most hospital facilities for Cubans have peeling paint, missing light bulbs, and electrical and water outages. On the flip side, there are positive stories. This one is written by a doctor who went to medical school in Cuba. He is answering, from his point of view, the question “is the Cuban healthcare system really as great as people claim? The Cuban healthcare system, borne out of its revolutionary socialist ideology, regards accessibility to healthcare as a fundamental right of its citizens. It focuses heavily on a preventative approach to medicine and offering the simplest check-up to the most complex surgery, free of charge. Dental care, medicines and even home visits from doctors are all covered by the system. My conclusion is that Cuba is not nirvana when it comes to healthcare, and the situation for those with disabilities is not as great as you would think based on the constitution. So, while I am disappointed, there are some positive steps worth noting. I feel incredible pain and anger about the difficulties I have in getting even meager services for my clients. I can only imagine how they feel having to live it.
We still have so much work to do to make it the system we all want to live in. Do you know anyone who has experienced the medical system in Cuba? I’d love to hear more first hand stories. Best of Health, Sima Kahn, MD Founder, Healthcare Advocacy Partners It’s hard to believe how time flies; we are rapidly approaching the end of October! Lately I have been thinking about what compels us to do what we do. Where does our drive come from? About 10 years ago I went to a conference given by Rachel Naomi Remen, doctor and author, who is a pioneer in the field of clinician well-being. I had read some of her books (Kitchen Table Wisdom and My Grandfather’s Blessings) and realized there were other physicians who felt like I did. One of the exercises she did during the conference was to ask participants how old they were when they first realized they wanted to take care of others: less than 5 years old, less than 10 years old, etc. Almost all of the physicians and nurses at the conference fell into the years between 5 and 10. I was younger than 5, and this realization led me to become a doctor. I also became a healthcare advocate when I saw the healthcare system failing to take care of us. Some of my most profound moments of change have happened when I become aware of injustice, inequity, or crimes against humanity that are committed in the healthcare arena. I was devastated when I read a 2007 blog post by Anna Baltzer, a Jewish American woman working to end the occupation of Palestine. Her friends were trying to take their 6-month-old baby, who was having trouble breathing, from their Palestinian town to their Palestinian hospital in the West Bank. They were stopped at Atara checkpoint by an Israeli soldier who kept them far longer than was necessary, causing the baby to die at the checkpoint. Earlier this year my book group read Never Let Me Go by Kazuo Ishiguro. This dystopian science fiction novel is about (spoiler alert!) a world where human clones are created so they can donate their organs as young adults. The book was incredibly distressing, and I was deeply affected by it. This is the epitome of medical care gone awry. But it’s just a novel, right? Yes, it’s a novel, but actually, organ harvesting is happening right now. The difference is that people are not being cloned for the purpose. On June 17, 2019, the China Tribunal delivered its Final Judgement and Summary report on forced organ harvesting from prisoners of conscience in China. According to the tribunal, China has been accused of organ harvesting since 2000, when it was forcibly removing the organs of death row prisoners. China claimed it was voluntary to redeem prisoners for their crimes, and supposedly stopped in 2015. However, organ transplantation has increased tremendously in China, and medical tourists have been going to China to purchase organs. There appeared to be a larger supply of organs than could be explained by executed criminals alone, and the tribunal set out to investigate. The summary is: “forced organ harvesting has been committed for years throughout China on a significant scale and that Falun Gong practitioners have been one - and probably the main - source of organ supply. The concerted persecution and medical testing of the Uyghurs is more recent and it may be that evidence of forced organ harvesting of this group may emerge in due course. The Tribunal has had no evidence that the significant infrastructure associated with China’s transplantation industry has been dismantled and absent a satisfactory explanation as to the source of readily available organs concludes that forced organ harvesting continues till today.” The estimate is that hundreds of thousands of people have been used as organ donors, and that the victims do not survive. Nor is there any intention that they survive, as surgeries include operations where hearts and kidneys are removed for transplant. “In regard to the Uyghurs the Tribunal had evidence of medical testing on a scale that could allow them, amongst other uses, to become an ‘organ bank’. The world is already watching their interests and their geographical location – although very large - may render it possible to lend them support more easily than for the Falun Gong who are dispersed throughout the country.” They go on: “Governments and any who interact in any substantial way with the PRC including: As it is, the Uyghurs are being subjected to incredible oppression, human rights abuses, forced into re-education camps, and what are essentially concentration camps. The murder of humans, used as donor banks for the lives of others, is unconscionable. It is the most heinous contamination of the discipline of medicine. These are truly crimes against humanity. This Uighur Journalist Is Bravely Fighting a Homegrown Cultural Genocide Gulchehra Hoja has dedicated her life to protecting her people, who are being tortured for their religion and identity Article by Jennifer Chowdhury So why am I devoting an entire newsletter to this? Because sometimes the highest form of advocacy for health is political action.
Here are some things we can do: • Discourage anyone from traveling to China for organ transplantation • Spread the word • Educate yourself about this issue • Write to your Congressional Representatives when an issue like the Uyghur Human Rights Policy Act of 2019 comes up for a vote (it was passed in the Senate and has been introduced in the House.) • Support local Uyghurs wherever you are—not a single family I know has been spared the disappearance of at least one relative. “When we know ourselves to be connected to all others, acting compassionately is simply the natural thing to do.” ― Rachel Naomi Remen |
AuthorDr. Sima Kahn muses on being a healthcare advocate, the troubles with our healthcare system, and how to advocate for ourselves. Archives
August 2021
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