I have a dream
Today we celebrate the life of Martin Luther King, a man who had a dream of racial equality. While we have made many great strides towards Dr. King’s goal racial equality continues to be a contentious issue. In honor of Dr. King we too in the diabetes community have a dream. The ultimate of course being a cure but in lieu of a cure it sure would be nice if the patient, those of us who fight this fight every day of our lives had a real voice.
For the past 20 plus years we have watched as companies have spent millions on new drugs and way cool whiz bang devices. We have seen many great strides towards making managing our diabetes easier. Yet, what we have not seen unfortunately is results. What we have not seen is a noticeable improvement in outcomes. Even with the millions spent most patients are not achieving good outcomes.
Worse still is many respects we have not moved forward but backward. The insulin pump market is an example as patient choice is now limited to just three systems and if things keep going as they are choice will be down to just two systems. Insulin a life sustaining drug for millions of patients has become unaffordable to many who need it. Access to the best drugs and devices is being denied because payors care more about their bottom line then they do about outcomes.
The sad part here is that helping patients and making money are not divergent goals. It is possible to put the patient first and make money too.
Today we will not attempt to assign blame as quite frankly assigning blame doesn’t solve the problem. And just as honestly there is more than enough blame to go around. No today in honor of Dr. King we will offer some suggestions;
1. End the arms race and develop systems that patients can use which are affordable. While patient choice in the insulin pump market is more limited we do not need more systems, which do the exact same thing just with a different logo plastered on them. We need systems which are patient friendly, reliable and affordable.
2. Industry, the JDRF and ADA must learn to work together. The distrust between these groups must end. More will be accomplished by working together.
3. Treat the patient with respect, keep in mind that for most diabetes management is NOT the most important thing they do. These people have lives to live, they have concerns that extend beyond managing their diabetes.
4. Along those same lines do not coddle the patient tell them the truth. Too often patients are treated like children being told what to do and when to do it. Most patients understand that diabetes is a serious condition that needs attention. However, they are not being told why they should do these things they are just told to do them.
5. This is probably a pipe dream, but industry should work together for greater access. The fact is payors have too much power and too much say in which drugs and devices a patient can use. Payors alone are not to blame for this as companies have contributed to the problem as they seek prime formulary placement. To be honest we have no idea what a workable solution is here we just know that the current system needs to be fixed so more patients have access to the drugs and devices they need.
The diabetes community also needs to make some changes and a good start would be ending the bias towards Type 1 patients. The reality is we all have the same disease. Is the life of a non-insulin patient less worthy than one who uses insulin? Does not a non-insulin using patient deserve affordable drugs and access to the best devices available?
Finally, it would be great if not just companies in this market but organizations like the JDRF and ADA LISTENED to patients, ALL patients not just those who use insulin. That they understood that for most patients they have disease they do not understand, that they don’t want and requires lots of work to manage. That most patients want to live their lives with their diabetes and NOT for their diabetes.
Our gray hair tells us that just as Dr. King’s dream of racial equality remains elusive so too will our dreams. But just as many carry the torch lite by Dr. King we should be equally committed to reaching our dreams. The ultimate of course being a cure but if we can’t have that lets at minimum work together so the fight is less taxing.