I ventured out a couple of weeks ago to do something I have tried to avoid for the last year and a half – navigate cancer treatment in Mexico. It was a day of bravery (one of many in Mexico, might I add).
While the Spanish is clicking a bit more nowadays for me and I can capture the gist of the conversation for the most part, learning how to say, “Where can I get my port flushed?” and “Do your labs check my kappa/lambda ration?” is a bit trickier. My usual blank stare, “No entiendo” and “Por favor, mas despacio” were not going to cut it.
For treatment I need two things – to get my port flushed and lab work done on a regular basis so that I can track my results. I will be going back for quarterly tests to the states, but I need to see if my numbers are changing at all.
In Mexico, they have labs they aren’t in a hospital or a clinic and I thought it would be efficient to drop in and get results. I showed them a list of lab tests that I needed and asked for a price (You should ALWAYS ask for a price before any service in Mexico). I’m so glad that I did. It was a shocking $11,000 pesos (about $850 USD). We don’t have health insurance in Mexico, so no way was I going to do that on a regular basis. It’s cheaper to fly to Houston.
A very kind man at the lab could tell that I was struggling with the language. He recommended that I try a doctor at the ABC hospital, which has a cancer center. Because there was little traffic (you have to take advantage of this when the moment hits), we decided to head over and try our luck there. Without an appointment, I was able to meet with one of the oncologists there at the ABC hospital. It was a very nice, new facility and everyone is very kind, gracious and competent.
Truly, people who are from Mexico would prefer receiving all of their healthcare from the doctors and nurses here as they say the bedside manner is more kind, patient and attentive. This is very true. The service is very personal, kind and less rushed. But because of the way that healthcare is administered here, it is a greater challenge to find “specialists” like you do in the states.
Of course they have pediatricians, dermatologists, and those types of specialities, but if you are looking for a myeloma specialist or have a lesser known disease, you have to do a bit more work. If you are a wealthy Mexican, you travel to see specialists in the states if you cannot find the doctors that you need here. Because the doctors get paid per visit, they do not have the luxury of limiting themselves to a small number of patients with highly specialized types of cancers. The oncologists treat everyone, so this doctor was one of 10 oncologists and personally treated 20 myeloma patients out of a total of about 200 myeloma patients at his facility.
In comparison, MD Anderson has about 600 new myeloma patients per year and the Huntsman program had built up their program to about 600 myeloma patients in total. The protocols in Mexico sounded about the same, so they do, in general, have the same treatment methods, but I want more specializing for my care.
He said that the medicines to treat myeloma are very pricey in Mexico. He mentioned that Thalidomide is pretty inexpensive here, but that Revlamid is about $10k per month. My Velcade costs monthly were about $30k per month, either in the US or in Monterrey. Without some kind of international insurance, it wasn’t do-able to be treated in Mexico.
At MD Anderson, I’ve seen people from all over the world who have traveled to the facility to receive cancer treatment. They even have an entire floor dedicated to patients from the Middle East because of the money paid or donated. Even inside of the US, the myeloma patients I know travel far distances both to MD and to Huntsman to get treated.
Because people both inside and outside of the US have this challenge, Paul and I have thought a lot about what will make a difference in curing cancers and other diseases – to offer the “best” care anywhere in the world. What could give this Mexican oncologist the same access to the research, data and latest advances in myeloma? How can his patients get the same kind of care as I can in Utah or Texas?
We started thinking about this 7 years ago when Paul’s brother David died from AML. From a patient perspective, trying to navigate cancer treatment, best possibilities and finding cures under duress is truly unnerving. When the staff from the 3rd floor wasn’t communicating with the staff from the 4th floor, we knew there were big impediments not just to progress, but to survival.
Obviously, we’ve learned more in the last 2 years. We have a better picture of both the talents, intelligence and compassion of the people working to make a difference and the challenges, bottlenecks and barriers that are preventing cures. As outside observers to the field of medical advancement, we see smart, capable people with silos of data trapped in a really bad organizational behavior model.
In part, we think the answer lies in bringing a patient’s data together – diagnosis, tests, family history information, lab results, diet, exercise, and all other data. Only then can doctors, researchers and patients start to see patterns across a specific patient base and begin to match up research and treatments with personalized cures.
To give you an example, there are 7 types of multiple myeloma, but there are a combination of about 3-4 drugs/chemo that are used by everyone (Dexamethasone, Revlamid and Velcade or next-generation of these). Some doctors do the drugs first and the transplant later. Some doctors recommend one transplant and then the drugs. Other doctors recommend two transplants and then the drugs (this is what I chose). When the myeloma recurs, the therapies get repeated or modified depending on what happens. I was tested to identify my specific type of myeloma (which took 6 months to identify), but right now, having this information won’t allow me to be treated any differently than other myeloma patients.
In the last 20 years of myeloma research, the life expectancy for myeloma patients has gone from 2-4 years to 4-6 years. Progress? Sure, but not enough for people who want to live for the next 30 years. I believe we can speed up the progress.
What if you could see (worldwide) the type of myeloma that you had and could match it against what was most effective with other patients with the same type? What if researchers worldwide had access to the same data without respect to their location? What if diet had an impact? Myeloma doesn’t seem to be genetic, but what if there were indicators because you could see genetic data across multiple generations within a patient pool?
There is more to do. I have a friend who has had cancer come back three times and says that she can’t quite get to the point where she says that she is thankful for cancer. I get it. Adversity is painful. She has had a masectomy, received radiation, chemo, lost her hair and had part of her lung removed. She also lived in Monterrey and has flown back and forth between Dallas and Mexico for treatment. It is exhausting and emotionally draining, but her example and positive attitude has been stunning (and she can beat me in a footrace any day of the week).
It has not been easy, but I do say now that because of our experiences, we are informed and motivated enough to do something about it. Our scope is wider and our view is international. And now our work begins.