Getting Loud and Angry

Jun 10 2015 Published by under [Medicine&Pharma]

I remember when Acquired Immune Deficiency Syndrome (AIDS) first appeared as a case report in the 1970s. This mysterious illness shared epidemiological features with hepatitis B and some other disorders that made a virus the likely culprit. Eventually we discovered HIV and a number of drugs that have turned this former death sentence into a chronic manageable disease. Magic Johnson has been living with HIV for almost 25 years now! The cure is still out of reach, but what progress in 37 years, from “we have a syndrome” to a chronic disease.

How did this happen? We threw a ton of money at AIDS/HIV. Why did we designate so much funding to a disease that the mainstream had little to fear? At risk and affected people knew how to make some noise. Organizations like ACT UP lobbied and protested. Entertainers and politicians showed support with red ribbons.

Funds at the NIH got earmarked. Not all of that money led straight to scientific advances, but with that much moola driving things, things got done. It was almost like the space-shot of the 1980s.

Once upon a time, kidney disease had vocal advocates. When dialysis first became a practical treatment, it was performed on the floor of congress to get kidney failure treatment covered by the newly formed Medicare program.

Unfortunately, since those early days of yore, the focus for kidney disease has been on reducing costs, not improving treatments. Sure, we have incremental changes in equipment for dialysis and new ways to prevent transplant rejection, but really novel stuff? Not exactly.

We also have contracting funding for kidney disease research, Partly this is because chronic kidney disease disproportionately affects the poor, minorities, and other disenfranchised people. Even high profile patients like Alonzo Mourning and Sarah Hyland have failed to motivate congress.

We need more visibility for kidney disease. We need loud and even angry patients demanding research funding so that we can have cures. Dialysis works fairly well, but we can make it better with more research. Transplant is even better, but it is not a cure. We also do not have enough kidneys for every patient, and there are some diseases that repeatedly attack the new kidney, making dialysis the only option. While Medicare covers dialysis for most patients, it may not allow the optimal prescription for everyone. It also cuts off transplant immunosuppression coverage after a couple of years, making patients choose between their medications and other expenses.

In other words, despite our progress, we do not have kidney disease figured out by a long shot. Our patients, friends, and loved ones deserve better. We need to demand it, loudly and, perhaps, with some anger.

4 responses so far

  • Neuro-conservative says:

    What do you think about the fact that HIV/AIDS is still a mandatory 10% of all NIH spending, including a similar portion of every Institute portfolio?

    • whizbang says:

      Seems wrong; NIH priorities should be determined more by what is actually harming people. Of course, I'm hoping we can get the kidney community to demand what the HIV/AIDS community has, so I'm going against my own preferences.
      Not the last time I will be hypocritical, I'm sure.

  • Zuska says:

    Congress allocating money for a disease that affects the poor & minorities? That will happen right after they make sure everyone who needs help from SNAP (food stamps) gets what they need, and without a bureaucratic nightmare of red tape.

    Let me know when the revolution comes.

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