Jill Bolte Taylor’s TED Talk. It is definitely worth the 45 minutes to watch. Jill Bolte Taylor is a brain scientist who has a stroke, and describes her journey in this video. It is inspirational and informative. Her book My Stroke of Insight: A Brain Scientist’s Personal Journey
Health and Living
If you have been frustrated by the managed care industry, denied claims that should have been paid, refused a referral to a specialist and wondered what you could do to advocate for yourself:
1.Keep good records. Follow up all phone conversations related to billing/reviews/referrals with a letter- preferably certified. Keep your own copies of all lab work, specialists reports and diagnostic testing. Insurance companies who know you keep a paper trail will treat you fairly, and doctors who know you keep a record of their notes will document accurately. It also gives you a chance to correct any errors. Also, if you have any medical problems, you will have your records if a medical crisis occurs.
2. Keep a copy of your insurance policy- often available online. A copy is also available through your employer if that is who you are insured through. This will have the process by which disputes are handled and referrals are made.
3. Always keep track of who you talk to, talk to the supervisor when you can, and get their direct line. Be firm but polite.
4. Be honest about what it is you need, and why it is you need it. While you may be very frustrated by explaining your situation a million times, each person hearing it is hearing it for the first time and they hear frustrated people all day. Tell them you are frustrated, but remain calm.
5. If you have a critical illness- many of the major insurance companies have critical illness programs that are not necessarily advertised – they will find you eventually via the claim trail- that do offer other ways to help you. Also, hospital social workers are a wealth of information in helping find ways to reduce copays for medications if that is an issue.
6. If you cannot make nice with the insurance company- then ask whoever you are on the phone with how to file a formal complaint with the insurance company. Repeat yourself/ask the supervisor until you are told how to do that.
7. If that does not work, or you have questions at any time about managed care, then call the managed care board
HMO:
http://www.dmhc.ca.gov/dmhc_consumer/pc/pc_default.asp
Medical:
http://www.opa.ca.gov/healthcare/problems/medi-cal-complaints.aspx
Consumer Advocate Medical Care:
In 1971, there were less than 3 million cancer survivors living in the United States. In 2004, there were almost 11 million. As these numbers increase, and cancer survivors age and experience the late effects of treatments, new health challenges are faced that “everyday” doctors may not be familiar with. Cancer survivors are often in a position to need to advocate for their health needs in a different way than others.
Cancer Survivorship - Childhood Cancer
- Childhood Survivor Health Clinic Link to childhood survivor health clinics. Survivors of childhood cancer may visit these clinics (no cost) for screenings for late effects. Clinics are listed by state. Adult clinics are also listed at the Livestrong site. In Southern California UCLA has both an adult and childhood cancer survivor clinic.
- Children’s Oncology Group -Guidelines for the care of survivor’s of childhood cancer, download-able for primary care physicians if survivors do not live near a survivorship clinic. Guidelines per type of cancer treatment, late effects possible, symptoms, treatment, and screening necessary. It was in the 70′s and early 80′s that cancer began to be treatable, and children who had these treatments are now getting older and having the late effects. It is this model that the adult guidelines will be based on.
- Cancer Survivorship This is the CDC page on cancer survivorship, on the main page there is also a link to the Spanish translation of the site. Additionally there are resources for primary care physicians who will be dealing with the 10 million cancer survivors and the late effects they face.
- NCI – also has a summary of this article and a list of articles and studies that have been published from this long term/longitudinal study.
- Cancer Survivors Project – The Cancer Survivors Project is an organized, international community of long-term cancer survivors and their friends working together to improve the lives of children and adults after cancer. This is a private organization, founded by cancer survivors experiencing the late effects of treatment even before the research was published. There are many resources to research articles, books, and medical-care guidelines provided here.
Research Articles
Chronic Health Conditions in Adult Survivors of Childhood Cancer Kevin C. Oeffinger, M.D., Ann C. Mertens, Ph.D., Charles A. Sklar, M.D., Toana Kawashima, M.S., Melissa M. Hudson, M.D., Anna T. Meadows, M.D., Debra L. Friedman, M.D., Neyssa Marina, M.D., Wendy Hobbie, C.P.N.P., Nina S. Kadan-Lottick, M.D., Cindy L. Schwartz, M.D., Wendy Leisenring, Sc.D., Leslie L. Robison, Ph.D., for the Childhood Cancer Survivor Study. This is the link to the full text article that the New England Journal of Medicine published in 10/2006 on the Late Effects of Childhood Cancer. (link is to full article)
The Two-Edged Sword of Curing Childhood Cancer , Philip M. Rosoff, MD. New England Journal of Medicine, October, 2006. (link is to full article)
St Jude Long Term Follow Up Study – The Childhood Cancer Survivor Study (CCSS). St. Jude coordinates this on-going long term study. Not an article exactly, but the study on which many of the research is built.
Support- Groups and Forums
Cancer Care-Non-profit agency that provides free professional support for those who have or are dealing with cancer. Support groups are for patients with cancer- by cancer types and in general, for caregivers, partners, and spouses, and for those who have lost a loved one to cancer- groups for those who have lost a partner, parents who have lost a child, and those who have lost loved ones.
Care to Share Cancer Connection-National Children’s Cancer Society forums
Planet Cancer – Primarily for young adults with cancer. An upbeat site. Check out the “cancertainment” tab at the top if you want a little ‘sick’ cancer humor. Links to some excellent information with a kind of ‘in your face” attitude. Some of the comics and items in the store are really funny. Sick and kind of should be wrong, but really funny.
General Sites
1. American Cancer Society This is a very broad site that provides information on types of cancer, treatments, research, survivorship, and links to get more information. It does provide information about cancer in Spanish which also makes it a good resource.
2. Lance Armstrong Foundation A very optimistic, positive organization on an individual and organizational level. Find information and links for support, grants, opportunities to volunteer, and hear other survivors stories.
3. Planet Cancer – Primarily for young adults with cancer. An upbeat site. Check out the “cancertainment” tab at the top if you want a little ‘sick’ cancer humor. Links to some excellent information with a kind of ‘in your face” attitude. Some of the comics and items in the store are really funny. Sick and kind of should be wrong, but really funny.
4 .ACOR-Association of Cancer Online Resources -This is an excellent site with links to books, clinical trials, publications, and support groups. The researchers at UCLA and USC gave me this site as a reference and it is invaluable.
5 . National Cancer Institute – treatment protocols, clinical trials
6 . Cancer Quest Put on by Emory University this is one of the best sites to explain the disease process, detection, diagnosis and treatment for those of us who are not neurobiologists. No assumptions are made regarding prior knowledge about cancer, and the information is sufficiently detailed. It is also nicely presented for those of us who like a good video production.
7. Radiologyinfo – Developed by the American College of radiology, patient guide to radiology procedures (radiation/MRI/nuclear medicine).
6. Clinical Trials Government listing of clinical trials for cancer and other medical conditions
7. CURE – is a quarterly publication of research, updates, and treatments. Online and free paper mailings for cancer patients.