Questions answered
A new video on the NETest I talked about here back in April answers some of the questions I raised about it then–to my satisfaction at least. I still have concerns about the process of certifying lab tests and medical procedures. But hose concerns are with the lack of regulation of seemingly all tests and procedures in the medical field. I can’t honestly hold this test to higher standard than we have for cholesterol testing.
The NETest satisfies the standards in place…
Wren Labs is not talking about using the test–at least for now–as a diagnostic instrument. They are offering it only to patients who are symptomatic, have been diagnosed with the disease, and need some reliable way of measuring the progress of the disease and whether or not current therapies are working for them. They also can use the test to determine whether or not a surgery has actually achieved a cure at a microbiological level.
Europe vs. US, as usual
The test is finding, according to the video, considerable acceptance in Europe and with at least one set of doctors in the US. But most American doctors seem reluctant to embrace it the way the Europeans have. I’m a bit confused by that and don’t buy the video’s explanation for it. Six hundred test subjects does seem still, to me, a bit thin statistically. But at the rate they claim to be getting samples from Europe, an examination of the data should prove conclusive soon enough–at least for the uses they are currently suggesting.
Wren Labs is not talking about using the test…as a diagnostic instrument.
It will require a different set of tests to determine how well it can diagnose carcinoid/NETs, but I don’t perceive a reason it should not work as one in the longer term if I understand the process it uses to determine tumor activity correctly. But I am neither a doctor nor a researcher. I hope, however, the necessary testing to determine its value as a diagnostic tool is done as quickly as makes sense. We desperately need such a test.
Progress on insurance front
The video also says they have received a billing number for insurance purposes from the AMA. It remains to negotiate reimbursement amounts from insurance companies–and that will take some time. In the meantime, they are still offering patients three tests for free. It would seem, to me at least, that carcinoid/NETs patients have little to lose and, perhaps, a great deal to gain, given this offer. Additional tests beyond that are $750 each–which they say covers their costs and nothing more.
American doctors seem reluctant to embrace it…
But I am not a doctor and am not giving medical advice here. You should talk to your doctor about the test if you have carcinoid/NETs and talk about how it would/could be used in your particular situation.
Another use for test
Nancy Teixeira, the nurse who makes the presentation, indirectly suggests that patients can use the test in another way: To discover whether their doctor is really up-to-date on carcinoid/NETs and really an expert on the subject. Between publications and a presentation at NANETS last fall, anyone who knows and follows the literature about this disease should be familiar with the test.
…they have received a billing number for insurance purposes…
If your doctor says he/she has never heard of the test, perhaps that person is not as expert as he/she claims. Certainly every doctor in the field I’ve talked to about the test has heard of it and is familiar with the research–even if they are not yet ordering it generally for their patients.
Another story for another day
For me, however, what I have learned about medical testing in the last few months while following this story–and about medical procedures as well–and the lack of real regulation or oversight of those things raises concerns no video can fully allay. The NETest research satisfies the standards in place for medical tests just as well as any other test in the medical arsenal.
…patients can use the test in another way…
Unfortunately, that’s not saying much. That is not a criticism of the NETest or those who developed it. They have followed the procedures in place. It is, rather, an indictment of the entire system we use to certify labs and testing procedures generally. There is no FDA-equivalent for diagnostic tests–no trials to run, no double-blind testing, no independent certification of any kind. I find that worrying–not just for carcinoid/NETs patients, but for everyone.
