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MAC Big Three Side Effects

MAC & Bronchiectasis | Last Active: Apr 19, 2023 | Replies (165)

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@dlynn1210

Our Governor vetoed research??? As you even acknowledged research is ongoing in Tampa and Miami. It’s not taxpayers responsibility to pay for research on an extremely rare condition which is found in every state - not just FL. I do ‘not’ expect or want all the taxpayers in FL to pay for research on MAC when only a select few of us are diagnosed with it. I may die with MAC but not from it unlike the thousands diagnosed with cancer every day.

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Replies to "Our Governor vetoed research??? As you even acknowledged research is ongoing in Tampa and Miami. It’s..."

The point to funding research in Florida is there must be something in the soil or water here causing so many cases of infection. Cancer research has federal funding, looking for why it occurs in some people and not others and even why there are “cancer clusters in certain areas of the country and they are looking for a cure. They look for “the why”- it’s not for a taxpayer funded government handout to cancer sufferers. The same principle would apply for Florida-to find out why the cases of MAC are exponentially greater here than in other states. Is our water supply contaminated? Is our soil contaminated? Some states DO have state funding for research into MAC-just not Florida, which has the most cases per capita. Our federal government funded research to discover the cause of TB which is a similar mycobacteria.
Let’s say your drinking water is contaminated with mycobacteria and caused your MAC lung disease, don’t you think it’s important to uncover that potential public health threat?? The research in Miami and Tampa are private facilities. If they find a correlation between the Florida drinking water filtration systems(just as an example) wouldn’t it be important to share that information so the state can test our water and make sure it is safe?
I don’t know about you but doctors took over 2 years to diagnose my MAC disease. How many more people do you think are walking around with this infection who haven’t been to doctors, who aren’t diagnosed but have been exposed and will become sick? Wouldn’t it be prudent to find the cause?