I Have Parkinson's and No Insurance: A Case for Advocacy

Has this ever happened to you? You need to see a doctor and can’t get an appointment because you don’t have insurance and the voice at the end of the phone tells you that they don’t make payment arrangements. This is happening more often and most people are unaware. Trust me, I know. How can this happen? When you file for disability, there is a 2 year delay before you are eligible for Medicare. Meanwhile, unless you have Medicaid or other insurance, you will have to pay out-of-pocket for the cost of your medical care. This includes the full cost of prescription medication. Medicaid has income restrictions though and lots of paperwork but now, in the digital era, you can file online and they will send you their response in an 8 page paper report by snail mail. This is what I refer to as the epitome of government waste!

For those that still remain employed and are covered by a group plan or covered under a spouses plan, you are fortunate, until coverage runs out. This could happen if you are no longer able to work or your spouse retires or becomes disabled. The healthcare system in the United States remains unstable, uncertain and broken and the Affordable Care Act’s (ACA) attempt to cover the uninsured will never succeed in its current form. That doesn’t stimulate a whole lot of confidence and insurance companies are just as confused on what to expect next.

What to expect next

Who’s to say? You’ve got both political parties saying we care about the uninsured and have a plan. In fact, they have several different plans, all of which are supposed to fix the problem. In my opinion, the problem isn’t the delivery system, it is that you’ve got the wrong people working on a vehicle that have no experience in car repair. Politics is an agenda driven platform and everyone has a claim to stake. Doctors, patients, hospitals, research labs, lobbyists and so forth. As patients living with a chronic disease, or any condition for that matter, are caught in the middle of a political tug-of-war. We just want access to our doctors and prescription drugs without jumping through hoops and without any red tape. The relationship between doctor and patient is sacred and should not be undermined by governmental regulations or overreach by insurance companies. I understand some regulations are necessary to protect the consumer but too many interfere with the doctor/patient relationship and deny access to important medication. The truth of the matter is, we don’t know what to expect. This is where advocacy is so important.

A case for advocacy

It is essential to be your own advocate. This doesn’t mean you are alone. There are medical, social, policy and patient advocates that can help meet your needs and to make sure your voice is heard.

• Medical Advocate – A medical advocate could be a physician, nurse, physician assistant or other trained medical professional that works on your behalf.
• Social Worker – This is a type of therapist that advocates in many different areas for you. Could be financial, arrange transportation, schedules appointments, arranges home health, physical therapy and other tasks.
• Patient Advocate – This person could be a care partner or other designated individual that has access to your medical treatment and the authority to discuss it with medical staff in your best interest.
• Policy Advocate – Someone who influences public policy decision makers on matters concerning healthcare.

There are all kinds of advocates besides the ones listed here and they can help you receive the best care available or navigate the legal maze usually associated with insurance or lack thereof. An advocate eases the stress of trying to access treatment as you struggle with the symptoms of living with PD or other disabling condition. My advice is to identify these people early in your diagnosis and remember they are there to help you when you need them.

When you need them

I am not saying you will need an advocate but if you do, they are there to help. They should be trustworthy, knowledgeable and patient centered. These are quality characteristics in any choice for an advocate. You of course are your own best advocate. Most of the time you know what it is you need. Notice I said, “most of the time.” We don’t always know the best path to take when it comes to our healthcare needs. Parkinson’s is a progressive, degenerative disease and can affect your decision making process. If this occurs, it may be a good time to ask for help. Getting back to my original point, if you find that whether you are experiencing problems from not having insurance or not having a plan that covers all of your medical expenses, do not despair. You do not need to spend days on the phone or hours on hold. There is hope in employing an advocate who knows and can help you navigate the healthcare, insurance or legal landscape.