Medical Records Bill Moves Ahead Again
Imagine getting diagnosed for a disease like cancer and being told by your doctor that your medical records were destroyed without your knowledge? Remarkably, except for a few isolated legal requirements, doctors do not have to hold onto your records for any period of time, much less inform you when they decide to destroy your records.
While patients have a legal right to view and copy their medical records that assumes the records exist in the first place. Doctors can simply shred your records for taking up too much space on their shelves or hard drives. Your medical records do not belong to you and never have.
Most people would be shocked to hear this. But 10 years ago, my wife Rosalie and I lived it. My wife had been stricken with breast cancer twice over a 14-year period. When she was stricken the second time, I tried to retrieve her original tumor pathology slides and radiation records to determine whether her cancer was new or recurrent and whether she was a candidate for more radiation.
As we regrettably learned, the slides had been destroyed and the radiation records were missing. In the case of cancer and other diseases that go into remission for possibly decades, treatment plans are dependent on what has happened before. In the mad rush to move quickly to treatment, doctors recommended my wife be radiated again. But without the radiation records, there was no way of knowing whether she had reached the lifetime maximum when she was treated for her first cancer. Without medical records, disease management becomes one of pure chance.
I was outraged. It is hard enough as a patient and caregiver to come up to the learning curve when deciding on treatment options for disease, let alone navigating a system in which doctors are free to keep or destroy your medical records at will. It was clear to me our public policy needed changing. But the sobering truth of our democracy is, heaven help you if you are a private citizen and want to make a law!
Ten years ago, I helped spearhead legislation that would have required doctors to inform their patients about their medical records retention/destruction policy. The bill (SB 1415) passed the Legislature on a bipartisan vote, but was unfortunately vetoed by Gov. Schwarzenegger on non-meritorious grounds during his infamous feud with the Legislature over the budget. I was told by Schwarzenegger’s staff to just come back “next session” when he would have more time.
Next session turned into 10 years, but as I have learned, in democracy, making law is not just about substance, but about tenacity.
So for 10 years I persevered and am now partnering with state Senator Richard D. Roth, who agreed to author The Medical Records Protection Act. SB 1238 has received bipartisan and broad support from a coalition of health advocates, consumer groups, labor and insurance interests and has passed the Senate Health, Judiciary and Appropriations Committees on bipartisan votes. It is now headed to the full Senate next week.
Certainly, democracy in action requires more than just one man and his wife trying to make a law. If you feel that your medical records belong as much to you as your doctor and you feel that chance is not how medicine should be practiced in California, give your State Senator a call and ask them to support SB 1238. Your health may depend on it.
Longtime local resident Alan Boinus is a public policy advocate and chief executive of Starpath.club, which showcases emerging artists.
