The CDC just released its new guidelines to help doctors understand the looser guidelines so that patients may have some relief from the forced tapers or forced termination of medications. This has resulted in diminished quality of life, driving some into using illicit narcotics, or sadly driving some to suicide since there has been no relief.Read More
Living with a chronic Illness can be hard, plain and simple. Living with an invisible illness, one that causes chronic pain, is harder. It has become such a common practice for people to quickly judge another person based on their condition or based on their use of narcotic pain meds. It has even become true within our healthcare system and within the government. Sadly it is not uncommon for a patient to be looked upon as an “addict” simply because of a medication that they take. Much of this has happened in response to the media coverage of the Opioid Crisis and how the government is handling the crisis.Read More
When you hear someone say CDC I'm sure the first thing you think of is Centers for Disease Control! I thought the same until earlier this year. In early spring I joined a twitter chat on Healthcare and insurance issues faced by the chronically ill. It was a great chat and I felt a lot of issues were brought to the forefront. Due to this chat I found (they actually found me) a great organization called The Chronic Disease Coalition (CDC). Once I took time to look into the organization, I really liked the work they do – advocating for those with chronic illness by promoting awareness and encouraging all to take action Per Below, I will tell you more about this incredible organization and how you can become involved if this is something that speaks to you!
The nonprofit organization was founded in 2015 with the goal to create a platform for people with chronic conditions to speak out and take action to make a difference in their community, state or even across the United States. The CDC dedicates their time to protect patients’ rights and fight against discriminatory practices or policies that prevent patients from accessing care. Since the day they became an organization they have focused their efforts to advocate for people who live with lifelong chronic conditions like, MS, diabetes, lupus, kidney disease and cancer. The CDC promotes awareness and education in hopes that they can raise public awareness of the chronic health issues that we deal with on a daily basis. They do this in conjunction with encouraging other to engage in advocacy and provide advocacy tools that help fightagainst discriminatory practices As a whole, they recognize that we are strongest together, so they enable supporters to speak out and do the same when help may be needed to protect the rights of all patients.
One of the big things that this organization spends a lot of time on are the health issues that are being dealt with by the government at both state and federal levels. They really encourage us to get involved with any issues that may put patients lives or access to care in danger. Recently, they have been focusing a lot of time on the opioid crisis. Many have written letters, sent emails or called their representative to educate them on the issue. They have also been focusing attention on legislation across the country that would allow insurance companies to reject coverage for individuals simply because part of their medical bills are being paid by nonprofit organizations! This could mean that people would be unable to receive care of any kind, and would be especially dangerous for those who rely on treatment to stay alive.
If you visit the CDC Website you can find the facts on all the issues that have resulted from insurers, policymakers and others within the health space, trying to cut corners and increase their profits and the patient’s expense. They provide information about the problems that the chronically ill may face with insurance companies, in the workplace or at school! The website also gives you the options of sharing your experience dealing with all the issues brought upon by chronic illness. As well as the option to take action and write your legislators about some of the big issues like the ones mentioned above.
You also have the option to join the coalition.When you join the coalition you will receive information on the important issues and alerts when they need you to help stand up for patients rights. I joined the coalition in March of this year, and it has been a great experience. I have learned so much and realized just how much I didn't know about the real issues at hand. If you are concerned that they will overtake your inbox with alerts and such, that is not the case. I may get as many as 5 emails a month. In those emails we receive information about bills that we need to focus on or ways that we can help spread awareness or act as an advocate.
I asked a few of my "co-advocates" why they decided to join forces with the CDC and this is what they said.
I am an advocate because it seems like a lot of what we go through is unspoken in our society. I really want to bring a focus to those of us who struggle with chronic diseases and pain on a regular basis. I want lawmakers to know what we go through, so they can make informed choices, instead of voting against our interests. -Gwendolyn Bahu
I chose to become an advocate because I don’t want anyone to go through what I have with endometriosis or any other illness. Chronic diseases are debilitating and wreak havoc on every aspect of our lives and desperately need more funding and awareness. I decided to be part of the Chronic Disease Coalition to help others and bring more awareness to chronic illnesses. - Samantha Bowick
If this organization sounds like one you. would liked to get involved with make sure to go to their website and find out more about getting involved. It feels so good to know that you are working on something that could impact thousands of lives.
**All pictures used for this post were taken from the CDCs Website with approval**