Everything Changes - The Guide to Young Adult Cancer

By Jackie B-F and Kairol Rosenthal

As a patient, you have the right to access your own medical records for a “reasonable” fee, according to federal HIPAA laws.  Most doctors’ offices and hospitals charge copying fees, which range widely in price, and add up if you have a thick chart. Here are a few ways to get your records for free or at reduced cost:

1. Make friends with the office staff. Receptionists and nurses deserve to be treated well for all the work they do for us and will often reciprocate our kindness.  Some may copy your records for free.  Be sure to say “thank you!”

2. Ask for your records a little at a time. Did your doc just read your lab report over the phone? Ask them to drop a copy in the mail.  Did they explain your pathology report during your appointment? Ask for a copy for your personal files.  Staff may be more inclined to print for free three pages here and there rather than 200 all at once.  And, if their office outsources medical records copying, they might rather make a three-page report using their own copier than process with their outside vendor the paperwork for such a small order.  Also, doctors and hospitals often don’t charge a fee to send your information directly to another doctor or institution.  If doctor ‘A’ sends a part of your medical file to doctor ‘B’, be sure to ask doctor ‘B’ for a copy of it at your next appointment.

3. Sign up for online charting. Some medical institutions are beginning to offer password protected online systems that allow patients to view test results and communicate with their doctors. Ask your oncologist, or other doc, if they have such a system and if so, sign up for it and continually request that lab results and notes be posted there.  Print from this system new records as they are posted and include them in your personal hardcopy files.

4. Get help from a social worker or patient advocate. These people know the ins and outs of the hospital.  Ask about financial assistance for medical records copying or see if they have the ability to waive your fees.  Remind them that you are a young adult cancer patient and describe the financial burdens your care imposes.

5. Offer to pay a reduced amount. As with asking for a reduction in the cost of your medical bill, care providers are more inclined to say ‘yes’ if you make a good will offer to pay some amount, even if it is only a fraction of the charge.

6. Understand the law. Many states set legal limits on medical copying fees. Google the name of your state and “medical records copying fees” to see if your state has such laws.  Be sure the information you retrieve is from an official state government website.  If you are being charged beyond what the law allows, politely explain this to your doc or hospital, and show them a print out of the law.  If needed, raise the issue with an administrator higher in the chain of command.  Calmly threatening to call your State Attorney General’s office is a last resort that often yields action.

How much have you been charged for medical records?  Have you found ways to work around the costs?

For more information on how to work the system and save money, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Good News
I went to Memorial Sloan Kettering on Thursday and had excellent news: My tumors are stable, they have not grown (ye-haw)! I have to wait for the blood tests to come back next week to confirm. It made me think about this:

You’re leaving the doc’s office after a blood draw, a pap smear, or depositing some other bodily byproduct, and the doctor says, “We’ll call you in a week or two if something is wrong.”

You go home biting your fingernails and don’t know when to stop. Are the results in but they didn’t call because everything is fine? Or is there a slip of paper that says “You are dying” that fell behind the nurses’ desk and got chucked in the recycling bin by the nighttime custodial staff?

Caller Number #1
Even if your head does not dance with these neurotic visions, even if you have the utmost confidence in the administrative functioning of your doc’s office, never accept the pat answer: “Don’t call us we’ll call you.” Part of being a proactive patient is staying on top of your test results. In the medical system, small administrative errors can have major health consequences. It is simply good practice to call relentlessly until you have a definitive answer.

Do you get nervous waiting for routine test results? Do you trust them to call you back? Are you aggressive? How does the office staff treat you when you are persistent in calling for test results? Are you ever too intimdated by your doctor or their staff to ask for what you need?

Flirting in Bars

In today’s Huffington post I talk about 20 and 30-something cancer patients cramming for finals, flirting in bars, climbing the first rung on our career ladder, and changing stinky diapers.

In my interview with Christine Hassler she asks: If you had one thing to share with recently diagnosed 20 and 30 somethings that you wish you had been told, what would it be?

My Response

You do not have to become a glittery superhero in order to fight adversity. Cancer is hard stuff. Strength comes from being real. Allow yourself to sometimes feel vulnerable and to have meltdowns. They do not last forever and you may even feel invigorated afterwards.

Secondly, the definition of hope is fighting for your best care. Cancer is not only emotional and physical, it is administrative too and the burdens of paperwork can really impede our healing. Many hospitals have patient representative services or ombudsmen. If after your second try you are unsuccessful at getting records, obtaining procedural approval, or resolving a financial matter, have one of these professional advocates intervene on your behalf. Think, question, and shout when you need to.

What is one thing you would share with newly diagnosed cancer patients that you wish you had been told?