8. Own Your Health Records

Get copies of all your medical reports. After each appointment or test, ask your doctor to provide you with a copy and save it.

You Own Your Health Records

This is all information about your health. You are entitled to all information easily supplied and delivered in a timely manner. Establish this expectation at the beginning of the relationship. Even with the most coordinated team, you should keep extra copies of your MRI CDs, pathology reports, medications, and medical records with you at all times. Don’t assume your medical institution will do a good job maintaining records or make it easy to quickly forward medical records.

“Tell them you want your medical records right away and follow up two days later if you don’t have them. Make sure you read them and that they are consistent with the conversation you had.” – Craig Yankwitt, Brain tumor survivor

Develop a document retention and filing system upfront. Some will be electronic, some will be paper, some could be films. They will be voluminous. They may come from different care providers, different institutions, different insurance companies, etc. You may need them later and will certainly need them if you ever choose to change doctors or treatment centers. Make sure you also back it up on the cloud and/or an external hard drive. Consider an online resource such as Blue Button to help you store your health records.[1]

“We ran into costly delays at times due to not having enough copies of the medical records easily accessible.” – Ryan Allis, Caregiver

Get Your Affairs in Order

The following documents will be extremely important to have on file, and it is important to get them together as early as possible. Make sure that all of your doctors and close caregivers have copies. Getting this information ready does not mean you are giving up your fight—even for healthy people it is a good idea to have these things should the need ever arise.

  • A living will/advance medical directive tells whether you want to be placed on life support or other “heroic” interventions.[2]
  • Health care proxy or medical power of attorney gives power to a trusted person to make medical decisions for you in the case that you cannot.[3]
  • Financial power of attorney gives a trusted person the power to manage your money. Give a copy to each bank or financial institution where you have an account.[4]
  • “A will is a legal document that defines what we want to do with our property, money, and other possessions (including children) after we die. These documents can be created independently (you can look online to find sample forms for you and your family to fill-out and keep on record), or formally with a lawyer.”[5]
  • A HIPAA privacy form allows you to tell your doctor who they can disclose your medical information to. List some of your main caregivers who you trust, and ask for a copy of the form. This will help your caregivers do things like picking up forms or discussing an issue with the doctor for you.[6]

Employment

Get your job in order. Think about how your life will change and recognize that your decision may change throughout your process depending on your abilities. There is no one right answer.

“Go to your employer right away and see if you can get a group guaranteed issued life insurance policy – no medical questions asked. Look up if your company has a disability policy and understand it.” - Craig Yankwitt, Brain Tumor Survivor

Consider relevant employment laws. “As long as you can do your work, there are laws to protect you from discrimination due to a brain tumor diagnosis…. No matter what type of relationship you have with your boss, it’s good practice to keep records of your conversations regarding your diagnosis. If you request accommodations for your work, ask for this in writing.”[7]

  • The Americans with Disabilities Act is a federal law that protects workers with a disability (including a brain tumor and/or effects of treatment) against discrimination as long as a worker can complete his/her job. The law requires that employers make reasonable accommodations so people with disabilities can function.[8]
  • The Family and Medical Leave Act entitles eligible employees to take up to 12 workweeks of unpaid, job and benefit-protected leave in a 12-month period for specified family and medical reasons.[9]
  • Social Security Disability Insurance provides a monthly payment to people who have worked for a sufficient period of time, have paid Social Security taxes, and are deemed “disabled.”[10]
  • Supplemental Security Insurance: If you have a very low income and minimal savings and assets you may qualify for benefits. These would begin immediately. You would be able to receive monthly payments during the SSDI waiting period, if you qualify. You may also qualify for the Supplemental Nutrition Assistance Program (SNAP, formerly Food Stamps) and Medicaid. Medicaid can be a welcome relief, if you are struggling to pay for private medical insurance and are able to qualify.[11] 

“Pick a certain day to be ‘health care bill day.’ Use this allotted time to work on the task of keeping things organized. This will prevent it from becoming overwhelming.”-Frankly Speaking[12]

Figure out your health insurance. If you don’t have health insurance, look into plans through Healthcare.gov. Your cancer diagnosis cannot prevent you from buying health insurance under federal law. If you do have insurance, here are some questions to ask your insurance provider as early as possible:

  • Do you need to obtain precertification for hospitalization or treatment?
  • Do you need to obtain a second opinion before non-emergency surgery?
  • Do you need to stay within a particular network of hospitals or physicians to receive your benefits?
  • Does your policy have a deductible?
  • Will your insurance cover investigational treatment if you choose it?”[13]

“The total bill for my surgery was around $57,000. We paid about $2,000 out of pocket. Health insurance is a godsend. I wish everyone had it.” -Everywhereist[14]

Links

Cancer Legal Resource Center

LawHelp.org: legal services

National Cancer Legal Services Network: legal services

Patient Advocate Foundation Co-Pay Relief

NeedyMeds is a resource dedicated to helping people locate assistance programs to help them afford their medications and other healthcare costs

Partnership for Prescription Assistance seeks to increase awareness of patient assistance programs and boost enrollment of those who are eligible

Patient Access Network Foundation is dedicated to helping federally and commercially insured people living with chronic, critical and rare diseases with the out-of-pocket costs for their prescribed medications

Healthcare.gov: insurance coverage

Patient Advocate Foundation provides professional case management services to Americans with chronic, life threatening and debilitating illnesses

Cancer and Careers empowers and educates people with cancer to thrive in their workplace

Continue Reading

10 Steps: Living with Brain Cancer

Sources

[1] “Blue Button,” HealthIT.gov, http://healthit.gov/patients-families/your-health-data

[2] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[3] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[4] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[5] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[6] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[7] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[8] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[9] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[10] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[11] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[12] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABCand the Musella Foundation, 2013.

[13] “About Brain Tumors,” American Brain Tumor Association, 2012.

[14] Everywhereist, http://www.everywhereist.com/