November 22, 2012

The Many Forms of Advocacy

Merriam-Webster's dictionary defines advocacy as the act or process of advocating or supporting a cause or proposal. This is just a general definition. There are other forms of advocacy and one that fits quite well - advocacy represents the series of actions taken and issues highlighted to change the “what is” into a “what should be”, considering that this “what should be” is a more decent.

For purposes of this discussion, the above is considered part of health advocacy. Health advocacy supports and promotes patient's health care rights as well as enhance community health and policy initiatives that focus on the availability, safety and quality of care. These are just a few of the forms of advocacy and each is important.

I can understand those that are just newly diagnosed with diabetes not being active advocates for diabetes. They are still trying to find the path of maintenance that works for them. However, others that have had diabetes for several years that say or do nothing need to realize that they must speak out for things they have found lacking in their own experiences. They must know that advocacy takes many forms and by remaining silent only lets people who might benefit by what they may say continue without information or direction that may be helpful. This is one reason why I blog, to put information out that may assist people and educate them that a diagnosis of diabetes is not a death sentence.

I feel better knowing that I am busy and working for the education side of diabetes. Those of us with type 2 diabetes have many causes that we can advocate for and most of them need our voices to be heard loud and clear. Some of these causes are:

1. The need for more test strips to help us manage our diabetes more efficiently, to determine what foods do not spike out blood glucose levels.
2. The need for better nutrition information tailored to our needs and not the needs of government.
3. To be recognized as individuals and not lumped into a one-size-fits-all category.
4. Training to be peer mentors or peer-to-peer workers to help others with type 2 diabetes.
5. Better information about oral medications - the limits of each, side effects, and changes dictated by the Federal Food and Drug Administration.
6. More information about insulin and the education of people with type 2 diabetes about the advantages of insulin when oral medications are not working for us.
7. More community involvement to educate not only the community, but assist other people with diabetes set realistic goals for themselves to 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 and leaves many items for people to expand and become advocates for their change. Some will say that education is not advocacy because it does not raise funds for research and the cure. I say that we have a great need for education to become aware of areas that need research.

I have been blogging about self-management of blood glucose (SMBG) because we need to know what to do for more efficiency in testing. The Centers for Medicare and Medicaid Services (CMS), the Centers for Disease Control and Prevention (CDC), the US Department of Agriculture (USDA), and the Department of Health and Human Services (HHS) all have funded research aimed at reducing the number of test strips we can use for testing our blood glucose levels. In selecting participants for the trials, they exclude people that are knowledgeable in SMBG and include people that do little or no testing of their blood glucose. How do they know there are people that do little or no testing? They know that there are doctors that do not encourage their patients to test so they look for these patients. These doctors do not encourage testing for many reasons. They don't want their patients to become depressed when they see high blood glucose readings and some follow the USDA logic of whole grains (high carbohydrates) and low fat and don't want their patients to understand what is happening to them. Most of the trials do nothing to educate the participants about what the testing will do and therefore the A1c levels change very little. The researchers can then say that testing makes no improvement in the health of the trial participants, and the CMS uses this information to reduce the number of tests strips covered and eligible for reimbursement.

This is why we need to advocate for proper research and education in blood glucose testing. We need to demand that the research be done scientifically and use education to show what proper blood glucose testing can do for reducing A1c's and improving the health of the trial participants. One such study has been done, but it is not getting the recognition it deserves. Roche Diagnostics performed the study using the Structured Testing Protocol (STeP). More studies are needed to show what proper blood glucose testing to do for lowering the A1c.

The other government agencies, the USDA and HHS do not want people to know that the problem with their nutrition guidelines are what is behind much of the diabetes epidemic and obesity epidemic and they support the CMS position on reducing the number of test strips. Until people with diabetes are taught the purpose and value of SMBG, this is widely publicized, and more trials are advocated for, we will have little to refute the CMS position and prove what USDA and HHS guidelines are causing much of the problem.

Yes, we will still have many people with type 2 diabetes that seem to not care and believe these government agencies can do no wrong. If only they knew!

Before stopping your reading on advocacy, please go to Health Central and read a recent blog by David Mendosa on his thoughts on diabetes advocacy.

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