The Many Forms of Advocacy

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Merriam-Webster's dictionary definesadvocacy as the act or process of advocating or supporting a cause orproposal. This is just a general definition. There are other formsof advocacy and one that fits quite well - advocacy represents theseries of actions taken and issues highlighted to change the “whatis” into a “what should be”, considering that this “whatshould be” is a more decent.
For purposes of this discussion, theabove is considered part of health advocacy. Health advocacysupports and promotes patient's health care rights as well as enhancecommunity health and policy initiatives that focus on theavailability, safety and quality of care. These are just a few ofthe forms of advocacy and each is important.
I can understand those that are justnewly diagnosed with diabetes not being active advocates fordiabetes. They are still trying to find the path of maintenance thatworks for them. However, others that have had diabetes for severalyears that say or do nothing need to realize that they must speak outfor things they have found lacking in their own experiences. Theymust know that advocacy takes many forms and by remaining silent onlylets people who might benefit by what they may say continue withoutinformation or direction that may be helpful. This is one reason whyI blog, to put information out that may assist people and educatethem that a diagnosis of diabetes is not a death sentence.
I feel better knowing that I am busyand working for the education side of diabetes. Those of us withtype 2 diabetes have many causes that we can advocate for and most ofthem need our voices to be heard loud and clear. Some of thesecauses are:
1. The need for more test strips to help us manage our diabetes moreefficiently, to determine what foods do not spike out blood glucoselevels.2. The need for better nutrition information tailored to our needsand not the needs of government.3. To be recognized as individuals and not lumped into aone-size-fits-all category.4. Training to be peer mentors or peer-to-peer workers to help otherswith type 2 diabetes.5. Better information about oral medications - the limits of each,side effects, and changes dictated by the Federal Food and DrugAdministration.6. More information about insulin and the education of people withtype 2 diabetes about the advantages of insulin when oral medicationsare not working for us.7. More community involvement to educate not only the community, butassist other people with diabetes set realistic goals for themselvesto not only manage diabetes to prevent the onset of complications,but to prevent those with prediabetes from developing diabetes.
This is a very incomplete list andleaves many items for people to expand and become advocates for theirchange. Some will say that education is not advocacy because it doesnot raise funds for research and the cure. I say that we have agreat need for education to become aware of areas that need research.
I have been blogging aboutself-management of blood glucose (SMBG) because we need to know whatto do for more efficiency in testing. The Centers for Medicare andMedicaid Services (CMS), the Centers for Disease Control andPrevention (CDC), the US Department of Agriculture (USDA), and theDepartment of Health and Human Services (HHS) all have fundedresearch aimed at reducing the number of test strips we can use fortesting our blood glucose levels. In selecting participants for thetrials, they exclude people that are knowledgeable in SMBG andinclude people that do little or no testing of their blood glucose. How do they know there are people that do little or no testing? Theyknow that there are doctors that do not encourage their patients totest so they look for these patients. These doctors do not encouragetesting for many reasons. They don't want their patients to becomedepressed when they see high blood glucose readings and some followthe USDA logic of whole grains (high carbohydrates) and low fat anddon't want their patients to understand what is happening to them. Most of the trials do nothing to educate the participants about what thetesting will do and therefore the A1c levels change very little. Theresearchers can then say that testing makes no improvement in thehealth of the trial participants, and the CMS uses this informationto reduce the number of tests strips covered and eligible forreimbursement.
This is why we need to advocate forproper research and education in blood glucose testing. We need todemand that the research be done scientifically and use education toshow what proper blood glucose testing can do for reducing A1c's andimproving the health of the trial participants. One such study hasbeen done, but it is not getting the recognition it deserves. RocheDiagnostics performed the study using the Structured Testing Protocol(STeP). More studies are needed to show what proper blood glucosetesting to do for lowering the A1c.
The other government agencies, the USDAand HHS do not want people to know that the problem with theirnutrition guidelines are what is behind much of the diabetes epidemicand obesity epidemic and they support the CMS position on reducingthe number of test strips. Until people with diabetes are taught thepurpose and value of SMBG, this is widely publicized, and more trialsare advocated for, we will have little to refute the CMS position andprove what USDA and HHS guidelines are causing much of the problem.
Yes, we will still have many peoplewith type 2 diabetes that seem to not care and believe thesegovernment agencies can do no wrong. If only they knew!
Before stopping your reading onadvocacy, please go to Health Central and read a recent blog by DavidMendosa on his thoughts on diabetes advocacy.