[THEME MUSIC] WELCOME TO THIS WEEK'S EDITION OF NEW YORK NOW.

I'M SHANTEL DESTRA.

NEW YORK HAS A BOOMING AGING POPULATION THAT IS ONLY EXPECTED TO GROW IN THE NEXT FEW YEARS.

IN JUNE 2025, GOVERNOR KATHY HOCHUL UNVEILED THE STATE'S FIRST EVER MASTER PLAN FOR AGING.

THE PLAN, WHICH INCLUDES ABOUT NINE PILLARS AND MORE THAN ONE HUNDRED PROPOSALS, WAS MEANT TO SHED LIGHT ON THE STATE'S BLUEPRINT TO SUPPORTING ELDER ADULTS.

BUT NOW ONE YEAR LATER, THE BIG QUESTION HAS BEEN: WHAT PROGRESS HAS BEEN MADE?

WHILE ADVOCATES CELEBRATED THE CREATION OF THE MASTER PLAN, THEY HAVE CAUTIONED THAT THE STATE HAS NOT MADE ENOUGH PROGRESS THROUGH ACTION.

THEY SAY THE STATE SHOULD RE COMMIT TO ENSURING ELDER ADULTS HAVE ACCESS TO HOUSING, RESOURCES, SUPPORT AND CARE.

IN THIS NEXT SEGMENT, WE SPOKE WITH SEBRINA BARRETT, WHO SERVES AS PRESIDENT AND CEO OF LEADINGAGE NEW YORK, TO UNDERSTAND THE IMPACT OF THE MASTER PLAN SO FAR AND HOW THE STATE CAN RAMP UP IMPLEMENTATION EFFORTS.

HERE'S THAT CONVERSATION.

>> THANK YOU SO MUCH FOR JOINING US ON THE SHOW, SEBRINA.

>> THANKS FOR HAVING ME.

>> OF COURSE.

NOW, IT'S BEEN ABOUT ONE YEAR SINCE NEW YORK STATE UNVEILED ITS MASTER PLAN FOR AGING.

AND AT THE TIME, THIS WAS SEEN AS A COMPREHENSIVE ROADMAP FOR HOW THE STATE WAS GOING TO BE SUPPORTING ELDER ADULTS.

SO CAN YOU HELP US UNDERSTAND THE IMPACT OF THIS PLAN AND HOW THE STATE HAS BEEN PROGRESSING SO FAR?

>> I'D BE HAPPY TO.

WE'RE MARKING THE ONE YEAR ANNIVERSARY, AS YOU SAID, AND A LOT OF TIME AND TALENTS WENT INTO THE FORMING OF THIS PLAN.

EXPERTS SPENT MONTHS MEETING AND PUTTING THIS TOGETHER, AND I'D LIKE TO SAY THAT WE'VE SEEN SOME SIGNIFICANT IMPACT FROM THE PLAN AT THE YEAR MARK, BUT UNFORTUNATELY WE HAVEN'T.

A FEW THINGS HAVE STARTED, BUT THERE'S SO MUCH MORE THAT NEEDS TO BE DONE, AND IT'S REALLY IMPORTANT THAT THE STATE MOVES FORWARD QUICKLY ON THIS PLAN.

>> SURE.

WHAT ARE THE THINGS THAT HAVE BEEN STARTED AND THE THINGS THAT STILL NEED TO GET DONE?

>> WE SAW A LITTLE BIT OF INVESTMENT IN SOME OF OUR SUPPORTED HOUSING.

SO WHAT THIS IS, IS HOUSING FOR OLDER ADULTS, AND IT PROVIDES SOME RESOURCES THAT HELP THEM CONNECT WITH COMMUNITY RESOURCES.

SO TELEHEALTH OR TECHNOLOGY THAT HELPS THEM CONNECT WITH HEALTHCARE PROVIDERS, FOR EXAMPLE.

THERE'S SO MUCH MORE THAT NEEDS TO BE DONE.

IT'S ONLY LIKE REALLY SMALL INVESTMENTS.

I'LL GIVE YOU AN EXAMPLE.

AT LEADINGAGE NEW YORK, WE ARE SUPPORTING WHAT WE CALL OUR RESIDENT ASSISTANT PROGRAM.

AND WHAT THIS WOULD DO WITH A SMALL INVESTMENT OF JUST $2 MILLION A YEAR THAT WOULD SAVE THE STATE ABOUT $6.5 MILLION A YEAR, THIS WOULD PUT IN RESIDENT ASSISTANTS, AN INDIVIDUAL WHO WOULD WORK IN THESE AFFORDABLE HOUSING PROGRAMS, AND THEY WOULD HELP OLDER ADULTS CONNECT WITH RESOURCES IN THEIR COMMUNITY.

SO HELP THEM GET DOCTOR'S APPOINTMENTS, HELP THEM IF THEY'RE MEDICAID ELIGIBLE, MAKE SURE THAT THEY ARE GETTING THOSE BENEFITS.

AND WE KNOW THAT THE SAVINGS COME BECAUSE BY CONNECTING THEM TO THIS CARE IN THEIR HOMES, IT KEEPS THEM OUT OF HIGHER LEVEL, HIGHER COST CARE SITUATIONS LIKE ASSISTED LIVING OR A NURSING HOME.

AND IT GIVES THEM THE PREVENTATIVE CARE THAT KEEPS THEM HEALTHY.

AND WHEN SOMEONE'S HEALTHY, THEN THEY'RE NOT GOING TO THE EMERGENCY ROOM.

THEY'RE NOT BEING HOSPITALIZED.

THEY'RE NOT GOING TO NURSING HOMES.

SO THESE ARE VERY SMALL INVESTMENTS THAT WE WOULD LIKE TO SEE HAPPEN THAT HELPS OLDER ADULTS STAY IN THEIR HOMES LONGER.

>> AND FROM YOUR PURVIEW, HAS THE STATE, SPECIFICALLY THE EXECUTIVE CHAMBER AND THE STATE'S AGING OFFICE, GIVEN ANY CLARITY ON THE TIMELINE ON WHEN THESE THINGS WILL ACTUALLY COME INTO FRUITION?

>> NOT REALLY.

THERE ARE SOME NEW FOLKS WHO ARE WORKING FOR THE GOVERNOR, AND WE'RE REALLY OPTIMISTIC THAT WE'VE HAD SOME PRELIMINARY CONVERSATIONS WITH THEM, ARE REALLY OPTIMISTIC THAT WE CAN GET ALL THE STAKEHOLDERS IN A ROOM AND START TALKING ABOUT WHAT'S REALLY DOABLE RIGHT NOW.

WE KNOW THAT SOME OF THE RECOMMENDATIONS WILL COST MONEY, BUT THE REALITY IS SOMETIMES YOU HAVE TO SPEND A LITTLE BIT OF MONEY TO SAVE A LOT OF MONEY.

AND THAT IS THE BEAUTY OF THIS PLAN.

WE KNOW THAT THERE ARE INITIATIVES IN THE PLAN THAT IF WE WERE TO MAKE THESE INVESTMENTS, IT WILL OVER THE LONG TERM REALLY SAVE THE STATE DOLLARS.

>> AND LOOKING AT THE PLAN, YOU MENTIONED THAT IT WAS PRETTY COMPREHENSIVE.

WE KNOW THAT THERE WERE ABOUT NINE PILLARS OF THEMES THAT THE STATE WAS GOING TO TRY TO USE AS A GUIDING LIGHT TO SUPPORT ELDER ADULTS OVER THE COURSE OF MORE THAN 100 PROPOSALS.

SO WHAT WERE SOME OF YOUR BIG TAKEAWAYS FROM THE MASTER PLAN?

>> SO THE RESIDENT ASSISTANT IS ONE OF THEM THAT'S NECESSARY.

WE ALSO NEED TO IMPROVE HOW WE'RE HELPING OLDER ADULTS WITH THEIR MENTAL HEALTH OR OTHER CONCERNS.

SO THERE ARE PROPOSALS IN THE PLAN THAT WILL BRING THOSE KINDS OF RESOURCES TO OLDER ADULTS AS WELL.

ALSO, THERE ARE PROPOSALS THAT, AGAIN, OUR MODELS IN NEW YORK STATE ARE OUTDATED.

THERE'S A MUCH MORE EFFICIENT AND BETTER WAY TO MEET OLDER ADULTS WHERE THEY ARE AND PROVIDE THEM THE CARE THAT THEY NEED.

AND THAT'S REALLY THE OVERALL THEME.

AND IF WE'RE DOING THAT, THEN IT'S A WIN WIN BECAUSE NOT ONLY ARE WE HELPING OLDER ADULTS STAY IN THEIR HOMES LONGER, PROVIDE THEM THE CARE AT THE LEVEL THAT THEY NEED, BUT THEN ALSO WE'RE FREEING UP THE HIGHER LEVEL OF CARE FOR THOSE ADULTS WHO NEED THAT.

SO I'LL GIVE YOU ANOTHER EXAMPLE.

OUR ASSISTED LIVING.

WE REALLY DON'T HAVE ENOUGH ASSISTED LIVING SPACE FOR LOW INCOME INDIVIDUALS.

AND SO RATHER THAN THOSE LOW INCOME INDIVIDUALS WHO RELY ON MEDICAID, RATHER THAN BEING ABLE TO GO INTO AN ASSISTED LIVING PROGRAM, THE ONLY OPTION FOR THEM IS A NURSING HOME.

THAT COSTS THE STATE MORE MONEY.

THAT'S A LEVEL OF CARE THAT THEY DON'T NEED AT THAT TIME, BUT THERE'S NOWHERE ELSE FOR THEM TO GO.

SO WE NEED MORE ASSISTED LIVING BEDS FOR LOW INCOME INDIVIDUALS WHO CAN GO AND GET THE CARE THEY NEED THERE, AND THAT WILL FREE UP THE SPACE FOR ADULTS WHO NEED THAT HIGHER LEVEL OF CARE.

ALSO, IT'S GOING TO SAVE THE STATE DOLLARS BECAUSE IF WE'RE ABLE TO CARE FOR AN INDIVIDUAL IN A LOWER COST ENVIRONMENT, THEN IT'S GOING TO COST THE STATE LESS MONEY.

>> YEAH.

AND KNOWING THAT THE STATE'S ELDER POPULATION IS ONLY EXPECTED TO INCREASE OVER THE NEXT COUPLE OF YEARS, HOW WOULD YOU LIKE THE STATE TO PROACTIVELY HELP AND SUPPORT THIS GROWING DEMOGRAPHIC?

>> SO THAT'S REALLY THE URGENCY, RIGHT?

WE KNOW THAT THIS IS GOING TO COST THE STATE MONEY.

WE KNOW THAT THE STATE IS GOING TO HAVE TO MAKE AN INVESTMENT.

BUT THE REALITY IS THE STATE IS GOING TO HAVE TO SPEND THAT MONEY REGARDLESS BECAUSE WE KNOW THAT OLDER ADULTS ARE ONLY INCREASING THE NUMBER OF OLDER ADULTS IN THE STATE.

THE OTHER THING THAT'S HAPPENING AT THE SAME TIME THAT'S REALLY SCARY IS THE WORKFORCE IS SHRINKING.

SO YOU'RE GOING TO HAVE A HIGHER NEED WITH A LOWER POPULATION OF WORKERS WHO CAN MEET THAT NEED.

SO WE NEED THE STATE TO INVEST IN OUR WORKFORCE.

WE HAVE, ACROSS THE ENTIRE CONTINUUM OF HEALTHCARE, WHETHER YOU'RE A HOSPITAL, ASSISTED LIVING, HOME CARE, NURSING HOMES, WE ARE STRUGGLING TO HIRE.

THERE'S JUST NOT ENOUGH WORKERS OUT THERE TO MEET THE NEED.

SO NURSES, WE NEED MORE NURSES.

SO WE NEED TO OPEN THE PATHWAYS THAT WILL HELP US BRING MORE WORKERS INTO THE STATE SO THAT THIS NEED IS GOING TO BE ADDRESSED.

>> AND WHEN I THINK OF SUPPORT FOR ELDER ADULTS, ONE OF THE THINGS THAT COMES UP FOR ME CERTAINLY IS THEIR FINANCIAL HEALTH AND WELL BEING, RIGHT?

LIKE THAT'S A REAL STRESS POINT FOR ELDER ADULTS.

SO WHAT SHOULD NEW YORKERS BE DOING RIGHT NOW TO PREPARE FOR RETIREMENT IN THEIR ELDER YEARS?

AND DO YOU THINK THAT THIS IS SOMETHING THAT THE STATE SHOULD BE PICKING UP TO SORT OF HELP WITH THAT FINANCIAL BURDEN OF ELDER ADULTS?

>> THAT'S SUCH A GREAT POINT.

NONE OF US WANT TO THINK ABOUT GROWING OLD, BUT WE NEED TO.

AND THE UNFORTUNATE THING IS THERE ARE SO MANY NEW YORKERS WHO DON'T THINK ABOUT IT UNTIL THEY OR THEIR LOVED ONE NEEDS CARE.

SO IT'S REALLY IMPORTANT TO START PLANNING TODAY, TO START THINKING ABOUT IT.

THINK ABOUT YOUR RETIREMENT SAVINGS AND PLAN FOR THAT.

LOOK AT LONG TERM CARE INSURANCE AND THINGS THAT MIGHT BE AVAILABLE.

BUT SO MANY NEW YORKERS, THAT'S NOT EVEN AN OPTION FOR THEM.

WE KNOW THAT THEY'RE JUST TRYING TO GET BY DAY TO DAY, RIGHT?

AND SO RAISE YOUR AWARENESS.

LOOK AT THE LONG TERM CARE SITUATION IN NEW YORK STATE AND BECOME AN ADVOCATE.

JOIN US IN ALBANY.

REACH OUT TO YOUR LEGISLATOR.

REACH OUT TO THE GOVERNOR AND TELL THEM THAT IT REALLY MATTERS, OUR SYSTEM OF CARE FOR OLDER ADULTS IN NEW YORK STATE, AND THAT YOU'RE CONCERNED ABOUT IT.

I THINK BECAUSE PEOPLE DON'T WANT TO THINK ABOUT GROWING OLD SO MANY PEOPLE FAIL TO RAISE THE ALARM.

AND WE REALLY NEED EVERYONE IN NEW YORK TO COME ALONGSIDE US AND REACH OUT TO THE LEGISLATORS THAT REPRESENT THEM AND MAKE SURE THAT THEY KNOW THAT THIS IS AN IMPORTANT ISSUE FOR THEM.

>> AND THAT'S A GOOD POINT BECAUSE THERE'S SO MUCH CONCERN, RIGHT, ABOUT THE FUTURE OF SOCIAL SECURITY AND WHETHER OR NOT THAT WILL BE SOMETHING THAT'S ACCESSIBLE TO THE YOUNGER GENERATION.

SO WHEN IT COMES TO THE STATE'S RELATIONSHIP TO THE FEDERAL GOVERNMENT, IN WHAT WAYS WOULD YOU LIKE THE STATE TO SORT OF TAP INTO FEDERAL RESOURCES TO SUPPORT ELDER ADULTS?

>> WELL, WE ALREADY KNOW THAT NEW YORK STATE IS A VERY HIGH USER OF MEDICAID, AND THAT'S UNFORTUNATELY NOT GOING TO CHANGE.

SO WE DEFINITELY NEED OUR FEDERAL PARTNERS.

WE NEED TO MAKE SURE THAT WE'RE COMMUNICATING WITH THEM AND REASSURING THEM THAT THOSE MEDICAID DOLLARS ARE BEING USED IN THE BEST WAY POSSIBLE, BEING USED RESPONSIBLY, AND TO PROVIDE THE MOST EFFICIENT CARE FOR OLDER ADULTS.

AND AGAIN, THAT GOES BACK TO SOME OF THESE MASTER PLAN ON AGING INITIATIVES THAT WOULD MAKE A LITTLE BIT OF INVESTMENT, WOULD MAKE OUR DOLLARS GO FURTHER THAN THEY ARE, AND ENSURE THAT PEOPLE ARE GETTING THE CARE, THE BEST CARE THAT THEY NEED FOR THE CURRENT NEEDS THAT THEY HAVE.

>> AND AS WE PREP FOR THE NEXT LEGISLATIVE SESSION, HOW WOULD YOU LIKE STATE LEADERS TO APPROACH THE MASTER PLAN FOR AGING?

AND IS THERE A SPECIFIC DOLLAR AMOUNT THAT YOU WANT TO SEE IN THE STATE BUDGET NEXT YEAR TO SUPPORT ELDER ADULTS?

WHAT ARE ADVOCATES SORT OF GEARING UP FOR?

>> WELL, WE KNOW THAT IT'S GOING TO BE ANOTHER TOUGH BUDGET YEAR.

WE UNDERSTAND THAT SOME OF THE POLICIES IMPLEMENTED BY THE FEDERAL GOVERNMENT THAT ARE TAKING DOLLARS OUT OF NEW YORK STATE IS GOING TO MAKE IT REALLY ROUGH.

WE UNDERSTAND THAT.

WE'RE NOT TONE DEAF.

BUT THE REALITY IS, AS WE'VE DISCUSSED, THE NEED FOR OLDER ADULT CARE IS INCREASING.

WE ALREADY KNOW THAT THE CURRENT FUNDING DOES NOT COVER THE ACTUAL COST OF CARE THAT OUR PROVIDERS, OUR NONPROFIT PROVIDERS ARE SPENDING.

SO, FIRST AND FOREMOST, WE NEED TO KEEP EVERY DOLLAR THAT WE ACHIEVED OVER THE PAST COUPLE YEARS FOR LONG TERM CARE FUNDING.

AND COSTS ARE CONTINUING TO RISE.

THE NEED IS GROWING.

AND THE REALITY IS WE'RE JUST GOING TO STILL NEED FURTHER INVESTMENTS.

BUT AGAIN, IF WE LOOK TO THE MASTER PLAN ON AGING AND WE START TO IMPLEMENT THAT PLAN, WE WILL SEE THAT WE'RE GOING TO BE USING THOSE DOLLARS MUCH MORE EFFICIENTLY.

>> WELL, SEBRINA, THANK YOU SO MUCH FOR YOUR TIME.

WE REALLY APPRECIATE IT.

UNFORTUNATELY, THAT IS ALL THE TIME WE HAVE FOR TODAY.

>> THANKS FOR HAVING ME.

>> AND WE WERE SPEAKING WITH SEBRINA BARRETT, PRESIDENT AND CEO OF LEADINGAGE NEW YORK.

AND APART FROM INCREASED CARE FOR ELDER ADULTS, ADVOCATES HAVE ALSO BEEN TRYING TO IMPROVE HEALTHCARE DATA PRIVACY IN THE STATE.

THIS PAST LEGISLATIVE SESSION, STATE LAWMAKERS PASSED A BILL THAT WOULD ESSENTIALLY EXPAND THE DEFINITION OF HEALTH DATA TO INCLUDE INFORMATION STORED ON DEVICES AND APPLICATIONS SUCH AS FITNESS APPS, DELIVERY ORDERS AND LOCATION FOR HEALTH SERVICES.

THE SPONSORS OF THE BILL ARGUE THAT THIS TYPE OF INFORMATION SHOULD ALSO BE PROTECTED UNDER THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT, ALSO KNOWN AS HIPAA.

OUR ELISE KLINE HAS MORE IN THIS NEXT STORY.

>> THIRTY YEARS AGO, THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT, OR HIPAA, WAS SIGNED INTO LAW, SHIELDING HEALTH DATA IN TRADITIONAL MEDICAL FACILITIES.

BUT SOME STATE LAWMAKERS FEEL THERE ARE SIGNIFICANT PRIVACY PROTECTION GAPS REMAINING FOR NEW YORKERS.

FROM FITBITS TO PERIOD TRACKING APPS AND EVEN GOOGLING SYMPTOMS, THERE ARE A LOT OF WAYS NEW YORKERS' HEALTH INFORMATION CAN BE COMPROMISED.

THIS YEAR, STATE LAWMAKERS PASSED, FOR THE SECOND TIME, A BILL INTENDING TO EXTEND FURTHER PROTECTIONS FOR HEALTH DATA.

>> I INTRODUCED THIS BILL QUITE A FEW YEARS AGO BECAUSE I SAW THAT PEOPLE WERE INCREASINGLY USING APPS AND GOING TO WEBSITES FOR INFORMATION ABOUT THEIR PERSONAL HEALTH ISSUES, BUT THERE WERE NO PROTECTIONS, AND THERE CURRENTLY ARE NO PROTECTIONS FOR PRIVACY ON THESE APPS; THEY ARE NOT PROTECTED BY HIPAA.

AND PEOPLE PROBABLY DON'T REALIZE THAT AS THEY FEED MORE AND MORE PERSONAL INFORMATION.

>> IT WILL BOTH SIGNIFICANTLY INCREASE PEOPLE'S AWARENESS OF RIGHTS AND PROTECTIONS.

IT WILL GIVE US THE TOOLS TO SLAP DOWN SOME OF THE MOST EGREGIOUS EXAMPLES, AND AGAIN, THERE ARE A LOT OF THEM.

>> THE BILL, IF SIGNED INTO LAW, WOULD EXPAND THE DEFINITION OF HEALTH INFORMATION TO INCLUDE DATA THAT IS REASONABLY LINKABLE TO NEW YORKERS AND THEIR HEALTH STATUS, SUCH AS A COOKIE ID, AN IP ADDRESS, A DEVICE IDENTIFIER, A LOCATION INDICATING RECEIVING HEALTH SERVICES, AND MORE.

THE BILL WOULD ALSO REQUIRE COMMUNICATION AND DISCLOSURE TO NEW YORKERS ABOUT HOW THEIR INFORMATION, WITHIN THESE REGULATIONS, IS BEING USED BY A COMPANY, ENTITY, OR INSTITUTION AND REQUIRE CONSENT FROM CONSUMERS.

STATE LAWMAKERS WHO SUPPORT THE BILL SAY THEY ARE CONCERNED ABOUT THE GROWTH OF BIG TECH COMPANIES THAT CAN MINE AND SELL CONSUMERS' DATA AND CONSEQUENTLY ABOUT NEW YORKERS WHO FACE PRIVACY THREATS WHEN THEY USE MECHANISMS LIKE HEALTH APPS OR VISIT CERTAIN HEALTH WEBSITES.

>> AND THE IDEA THAT YOU HAVE APPS AND OTHER SOFTWARE MINING PEOPLE'S HEALTH DATA AND SELLING IT OR USING IT FOR BUSINESS PURPOSES IS OUTRAGEOUS.

>> I THINK THE GENERAL RULE FOR SOMETHING LIKE CONSUMER PROTECTION IS THAT IF WE HAVE LED PEOPLE TO ASSUME A CERTAIN THING, WE SHOULD DELIVER ON THAT.

IF PEOPLE LEGITIMATELY ASSUME THAT SOMETHING IS PRIVATE, THEN IT SHOULD BE PRIVATE.

AND I JUST DON'T THINK IT MAKES SENSE TO HAVE PEOPLE SELLING THAT KIND OF INFORMATION.

>> SOME STATE LAWMAKERS SAY THIS BILL IS PARTICULARLY SIGNIFICANT BECAUSE OF HOW COMPLEX THIS ISSUE OF HEALTH DATA PRIVACY HAS BECOME.

STATE SENATOR GUSTAVO RIVERA, A DEMOCRAT REPRESENTING PARTS OF THE BRONX AND THE CHAIR OF THE SENATE HEALTH COMMITTEE, SAYS HEALTH DATA PRIVACY IS INTERTWINED WITH MULTIPLE ISSUES.

THE GROWTH OF TECHNOLOGY, ALGORITHMS AND CODE PROCESSING, FEDERAL GOVERNMENT SURVEILLANCE, AND BIG CORPORATIONS SEEKING TO MAKE MONEY OFF OF PEOPLE'S DATA.

>> BECAUSE ALL OF THESE THINGS THAT ARE HAPPENING AT THE SAME TIME, WE ARE ABSOLUTELY IN NEED TO PROTECT OUR PRIVATE INFORMATION.

AND SO IT SHOULD, IF IT'S GOING TO BE COLLECTED, IF IT'S GOING TO BE STORED, IT NEEDS TO BE WE NEED TO HAVE A THERE NEEDS TO BE AN EXPRESS CONSENT GIVEN BY THE PERSON, BY THE PATIENT, AND THEY MUST HAVE THE ABILITY TO BE ABLE TO RESCIND THAT CONSENT.

>> CONSUMERS SAY AVOIDING HEALTH WEBSITES AND APPLICATIONS IS PRETTY IMPOSSIBLE, AND THEY WORRY ABOUT THEIR PRIVACY.

>> IT DOES WORRY ME, AND ESPECIALLY WITH APPS, IT'S ONE OF THOSE THINGS EVERY DOCTOR APPOINTMENT YOU HAVE EVERY DIFFERENT DOCTOR, YOU HAVE A DIFFERENT APP, IT'S THE ONLY WAY SUPPOSEDLY TO INTERFACE WITH A LOT OF YOUR HEALTHCARE AT THIS POINT AND AGAIN, LIKE, YOU HAVE TO DO IT AND IF YOU DON'T WANT TO, WHAT DO YOU DO?

>> THE BIG WORRY IS THAT IT'S JUST NOT ANONYMIZED ENOUGH.

I FEEL LIKE THAT'S A FREQUENT EXCUSE; THEY'LL BE LIKE, OH, YEAH, WE SELL THIS DATA, BUT IT'S ANONYMOUS, AND IT COULDN'T BE TRACED BACK TO YOU, AND I JUST DON'T BELIEVE THAT.

>> OTHER CONSUMERS SAY IT'S ALSO EXHAUSTING TRYING TO PROTECT THEIR PRIVACY WHEN USING HEALTH APPS OR WEBSITES.

CASSANDRA KLEWICKI SAYS WHILE SHE'S TAKEN PRECAUTIONS SUCH AS SWITCHING HER PERIOD TRACKER APP TO A EUROPEAN ONE, WHERE SHE SAYS PRIVACY PROTECTIONS ARE STRONGER, SHE WORRIES ABOUT BEING MONITORED, AND THIS STATE POLICY COULD OFFER SOME RELIEF.

>> I'M SUPER HAPPY THAT THE STATE LEGISLATURE IS TAKING MY PRIVACY SERIOUSLY BECAUSE I DON'T THINK IT SHOULD BE ON ME TO HAVE TO MONITOR THIS STUFF.

>> ACROSS THE COUNTRY, HEALTH APPLICATIONS SUCH AS PERIOD TRACKERS, FITNESS APPS, MENTAL AND TELEHEALTH APPS, AND ONLINE PHARMACIES HAVE FACED LITIGATION, SETTLEMENTS AND OTHER FEDERAL PENALTIES FOR SHARING AND SELLING CONSUMERS' HEALTH DATA WITHOUT THEIR CONSENT.

COMPANIES LIKE FLO HEALTH AND GOOGLE SETTLED FOR A COMBINED $56 MILLION TO RESOLVE CLASS ACTION LEGAL CLAIMS THAT THEY UNLAWFULLY SHARED USERS' SENSITIVE REPRODUCTIVE HEALTH DATA SUCH AS MENSTRUAL AND PREGNANCY INFORMATION TO THIRD PARTIES WITHOUT CONSENT.

THE CEO OF FLO HEALTH SAID IN A STATEMENT SENT TO WMHT THE SETTLEMENT OF THE CASE WAS NOT AN ADMISSION OF WRONGDOING; IT WAS A MUTUAL AGREEMENT TO CONCLUDE THE MATTER.

META, ALSO INVOLVED IN THIS CASE, HAS NOT AGREED TO A SETTLEMENT YET, PUSHING BACK WITH POST TRIAL MOTIONS AND INDICATING PLANS FOR AN APPEAL.

WMHT REACHED OUT TO GOOGLE AND META, BUT THEY DID NOT RESPOND FOR COMMENT.

WHILE THE BILL PASSED BOTH HOUSES FOR THE SECOND TIME DURING THIS MOST RECENT LEGISLATIVE SESSION, IT WAS NOT MET WITHOUT CONTROVERSY.

THE BILL WAS VETOED LAST YEAR BY GOVERNOR KATHY HOCHUL, ACCORDING TO THE VETO MEMO, BECAUSE OF A BROAD SCOPE AND COMPLIANCE CONCERNS FOR CONSUMERS AND BUSINESSES.

THIS YEAR, STATE LAWMAKERS SAY THEY'VE MADE CHANGES TO ADDRESS THE GOVERNOR'S CONCERNS BY AMENDING THE BILL TO SIMPLIFY COMPLIANCE AND CLARIFY WHAT IS INCLUDED IN THE BILL AND WHAT ISN'T.

STATE LEGISLATIVE SPONSORS ALSO STRESS THIS BILL IS SIMILAR TO WASHINGTON STATE'S 2023 HEALTH PRIVACY LAW WHICH PROTECTS PERSONAL HEALTH INFORMATION OUTSIDE OF HIPAA AND INCLUDES OPT IN CONSENT FOR DATA COLLECTION.

>> WE DID A FEW MORE CHANGES.

BUT IT IS SO SIMILAR TO WASHINGTON STATE'S LAW, MY HEALTH MY DATA ACT.

SO, I DON'T REALLY BUY THAT IT'S DIFFICULT FOR TECH COMPANIES TO COMPLY.

THEY ALREADY COMPLY.

>> HOWEVER, SOME STATE LAWMAKERS AND BUSINESS GROUPS STILL OPPOSE THE LEGISLATION MAINLY BECAUSE OF CONCERNS FOR POTENTIAL NEGATIVE IMPACTS ON BUSINESSES AND CONSUMERS.

PAUL ZUBER, THE EXECUTIVE VICE PRESIDENT OF THE BUSINESS COUNCIL OF NEW YORK STATE, SAYS WHILE THEY DON'T OPPOSE THE ISSUE OF HEALTH PRIVACY, THEY STILL HAVE CONCERNS WITH THE BILL SIMILAR TO LAST YEAR'S VERSION WITH BROAD DEFINITIONS AND BURDENSOME COMPLIANCE REGULATIONS FOR BUSINESSES.

>> THE WAY THIS BILL WAS DRAFTED, IT CREATES COMPLIANCE OBLIGATIONS THAT ARE VERY DIFFICULT FOR MANY BUSINESSES TO MEET, PARTICULARLY DIFFICULT FOR SMALL BUSINESSES TO MEET.

SO WHAT HAPPENS WHEN YOU ADD BURDENS COMPLIANCE BURDENS, REGULATORY BURDENS, STATUTORY BURDENS ON BUSINESSES?

IT ENDS UP INCREASING COSTS, AND ULTIMATELY YOUR COSTS ARE PASSED ON TO CONSUMERS.

>> THE BUSINESS COUNCIL OF NEW YORK STATE, ALONG WITH OTHER LOBBYING GROUPS AGAINST THE BILL, SENT A COALITION LETTER TO THE GOVERNOR'S OFFICE URGING A VETO LAST YEAR.

THIS YEAR THEY SENT ANOTHER COALITION LETTER TO STATE LEADERS ABOUT THEIR DISAPPROVAL.

>> REMAINING CONCERNS AMONG THE BUSINESS COUNCIL OF NEW YORK STATE AND OTHER BUSINESS GROUPS ARE DEFINITIONS IN THE BILL THEY STILL FEEL ARE TOO BROAD, STANDARDS AND REGULATIONS THEY FEEL ARE TOO BROAD AND/OR BURDENSOME, AND INSUFFICIENT EXEMPTIONS FOR CERTAIN SECTORS.

ZUBER SAYS THE BUSINESS COUNCIL OF NEW YORK STATE ISN'T FULLY SATISFIED WITH THE CHANGES MADE AND FEELS THIS VERSION SHOULD BE VETOED OR AT LEAST ALTERED VIA CHAPTER AMENDMENTS.

>> THERE ARE STILL A NUMBER OF VERY CONCERNING PARTS TO THE BILL THAT WOULD MAKE IT DIFFICULT FOR BUSINESSES TO COMPLY.

AND SO WE'RE HOPEFUL THAT, YOU KNOW, IN THIS PROCESS, THAT WE CAN MAKE THOSE CHANGES.

YOU KNOW, OBVIOUSLY WE'LL BE ASKING FOR A VETO.

BUT IF WE DON'T, THEN IF THE GOVERNOR CHOOSES NOT TO, THEN WE'RE HOPEFUL THAT THE GOVERNOR, AT THE VERY LEAST, TAKES INTO CONSIDERATION WHAT WE'VE BROUGHT FORTH AND MAKE THE APPROPRIATE CHANGES.

>> SOME STATE LAWMAKERS WHO VOTED AGAINST THE BILL ALSO SAY THE BILL SEEMS TO BE POLITICALLY MOTIVATED AND THEY ALSO HAVE CONCERNS ABOUT ENFORCEMENT AND POTENTIAL IMPACT ON BUSINESSES AND CONSUMERS.

>> I THINK IT'S MORE OF A POLITICAL PANDER IN SOME CIRCUMSTANCES WHERE YOU HAVE JUST A HAMMER OF AN ENFORCEMENT ISSUE WHICH COULD BE ABUSED.

AND WE'VE SEEN THAT, QUITE FRANKLY, ON BOTH SIDES OF THE AISLE; WE'VE SEEN ABUSE OF ENFORCEMENT POWERS FOR POLITICAL REASONS, AND THAT'S REALLY A CONCERN.

THAT'S REALLY WHAT THAT BILL CONCERNS ME WITH BECAUSE I DON'T THINK IT ADDRESSES; IT'S A SOLUTION LOOKING FOR A PROBLEM.

>> SOME STATE LEGISLATIVE SPONSORS PUSHBACK, ARGUING THEIR COLLEAGUES SEEM TO LACK UNDERSTANDING OF WHY HEALTH PRIVACY IS IMPORTANT TO NEW YORKERS.

>> I THINK A BUNCH OF MY COLLEAGUES ACTUALLY BELIEVE THAT WHAT CORPORATIONS WANT TO DO IS FINE WITH THEM, AND I DON'T THINK THEY TALK TO THEIR CONSTITUENTS BECAUSE I JUST DON'T BELIEVE THAT ISSUES THAT GET BROUGHT TO ME CONSTANTLY IN MY DISTRICT ARE SIGNIFICANTLY DIFFERENT THAN THE EXACT ISSUES FACING CONSTITUENTS IN EVERYONE'S DISTRICT.

>> SENATOR KRUEGER ALSO ARGUES AGAINST BUSINESSES PUSHBACK, STRESSING THE CHANGES TO SIMPLIFY COMPLIANCE, CREATE BETTER CLARITY AROUND WHAT IS INCLUDED AND EXCLUDED IN THE BILL, ADDING MORE EXEMPTIONS, AND ADDRESSING THE GOVERNOR'S CONCERNS ON THE PREVIOUS VERSION.

THE SENATOR ADDS THE BILL TRACKS VERY CLOSE TO WASHINGTON STATE, WHERE COMPANIES ALREADY COMPLY WITHOUT NOTABLE LITIGATION OR CONCERNS.

THE BILL, IF SIGNED, SOME LEGAL EXPERTS STRESS, COULD HAVE A SIGNIFICANT IMPACT FOR NEW YORKERS' PRIVACY.

ALLIE BOHM, A SENIOR POLICY COUNSEL AT THE NEW YORK CIVIL LIBERTIES UNION, STRESSES THAT HIPAA ONLY APPLIES TO SPECIFIC SETTINGS AND CIRCUMSTANCES, WHICH LEAVES NEW YORKERS VULNERABLE FOR PROTECTIONS AGAINST OTHER HEALTH DATA.

>> THE NEW YORK HEALTH INFORMATION PRIVACY ACT WOULD CHANGE THAT.

IT WOULD PUT IN PLACE SOME SENSIBLE PRIVACY PROTECTIONS.

IT WOULD GIVE US MORE CONTROL OVER OUR ELECTRONIC HEALTH DATA.

REALLY IMPORTANTLY, IT BUILDS TWO DOORS FOR ACCESS TO THIS, OR I SHOULD SAY, FOR USE OF THIS INFORMATION.

>> BOHM ADDS THE FIRST DOOR FOR ACCESS WOULD LOOK LIKE PROVIDING THE GOOD OR SERVICE TO KEEP THE ENTITY'S WEBSITE ON THE INTERNET, FREE FROM VIRUSES AND FRAUD, TO RESPOND TO LEGAL OBLIGATIONS, AND TO IMPROVE THE PRODUCT OR SERVICE.

THE SECOND DOOR SHE SAYS, STRESSING ITS SIGNIFICANCE, IS PERMISSION AND CONSENT.

>> THEY HAVE TO ASK YOU FOR PERMISSION, AND SOME FOLKS WILL SAY, YES, YOU KNOW, I WANT TARGETED ADVERTISING.

IT REDUCES MY SEARCH TIME, OR I WANT TO BE PART OF INNOVATION.

AND SOME FOLKS WILL SAY, NO, THAT REALLY'S INTIMATE INFORMATION, AND I WANT TO KEEP IT PRIVATE.

AND BECAUSE IT'S NOT A THING TO BENEFIT YOU, NECESSARILY DIRECTLY, YOU SHOULD HAVE THAT CHOICE, AND THAT'S WHAT THIS BILL WOULD GIVE YOU.

>> SOME MEDICAL EXPERTS SAY THIS BILL COULD ALSO HELP ADDRESS THIS ISSUE IN HEALTHCARE SETTINGS WHERE PROVIDER PATIENT TRUST HAS FACED CHALLENGES PARTIALLY DUE TO TARGETED ADVERTISING BASED ON HEALTHCARE DATA OUTSIDE OF HIPAA.

DR.

CURTIS COLE, A PHYSICIAN AND PROFESSOR OF CLINICAL MEDICINE AT CORNELL MEDICINE, SAYS HE HAS HAD PATIENTS WHO HAVE COMPLAINED OF GETTING TARGETED ADS FOR THEIR DIAGNOSED ISSUES AND THEN EXPRESS CONCERN THAT THE HEALTHCARE FACILITY LEAKED THEIR INFORMATION.

>> EVEN IF WE IN HEALTHCARE HOLD THE DATA VERY SECURELY, PEOPLE LOSE THEIR PRIVACY WITHOUT EVEN KNOWING THEY'RE LOSING IT BY DOING STUFF THAT WE JUST DO, LIKE SENDING EMAIL OR BUYING THINGS.

AND I THINK THAT'S WHAT SENATOR KRUEGER'S BILL IS TRYING TO ADDRESS.

>> THE BILL CURRENTLY AWAITS REVIEW FROM THE EXECUTIVE CHAMBER.

SOME STATE LEGISLATIVE SPONSORS SAY THEY ARE UNSURE OF WHETHER OR NOT THE GOVERNOR WILL SIGN THE BILL BECAUSE OF HOW LAST YEAR'S VERSION WAS REVIEWED.

>> I HAVE NO IDEA; I DIDN'T THINK SHE WOULD VETO IT LAST YEAR.

BECAUSE THE WHOLE YEAR, LINDA AND I, THE ASSEMBLY MEMBER, KEPT SAYING TO HER PEOPLE, THIS IS A REALLY CRUCIAL BILL WE NEED TO GET THIS DONE.

TELL US WHAT YOUR PROBLEMS ARE SO WE CAN WORK ON THEM TOGETHER.

AND THEY WERE LIKE, NO, NO, NO, WE DON'T THINK THERE'S A PROBLEM; WE HAVE NOTHING TO SHARE WITH YOU.

AND THEN AGAIN, AT THE VERY END OF THE YEAR, SUDDENLY THERE'S ALL THESE PROBLEMS, THERE'S THREE WAY DISCUSSIONS, AND WE CAN'T POSSIBLY GET THIS DONE BEFORE THE END OF THE YEAR.

SO I DIDN'T THINK IT WAS A FAIR PROCESS.

>> KRUEGER SAYS WHAT SHE IS SURE OF IS THAT THERE WILL LIKELY BE DIFFERENCES WITH THE EXECUTIVE CHAMBER ON EXEMPTIONS FOR FINANCIAL INSTITUTIONS.

THE SENATOR SAYS THEY HAVE RECEIVED LOBBYING PUSHBACK WHERE CERTAIN GROUPS FEEL THE FEDERAL STATUTE CALLED THE GRAMM LEACH BLILEY ACT ARE SUFFICIENT ENOUGH.

THE 1999 FEDERAL STATUTE PROTECTS CONSUMERS' PRIVATE FINANCIAL DATA.

KRUEGER AND LEGAL EXPERTS ARGUE THE DEFINITION FOR FINANCIAL INSTITUTIONS IS BROAD, HIGHLIGHTING ANY INSTITUTION WITH A CREDIT CARD CAN BE CONSIDERED FINANCIAL, CREATING CONCERNS FOR BIG COMPANIES SCRUTINIZED FOR THIS ISSUE TO BE EXCLUDED.

>> IF YOU CARVE OUT ALL OF GRAMM LEACH BLILEY, YOU END UP WITH THIS MASSIVE HOLE WHERE THE ONLY THING THESE VERY LARGE COMPANIES THAT ARE PROFITING OFF OF OUR DATA, THAT ARE USING OUR DATA IN ALL SORTS OF WAYS, AND THAT COULD BE TURNING OUR DATA OVER TO THE FEDERAL GOVERNMENT OR A HOSTILE STATE, A STATE THAT IS HOSTILE TO ABORTION OR A STATE THAT IS HOSTILE TO TRANS FOLK TO USE HOW THEY WANT TO USE IT.

YOU'RE REALLY CARVING THEM OUT OF THE BILL, OR YOU COULD BE.

>> THE SENATOR SAYS THESE DIFFERENCES COULD BE WORKED OUT VIA CHAPTER AMENDMENTS, BUT IT REMAINS UNCLEAR IF THAT'S THE DIRECTION THE GOVERNOR WILL GO IN.

A SPOKESPERSON SAID IN A COMMENT SENT TO WMHT THAT THE GOVERNOR WILL REVIEW THE LEGISLATION.

THE BILL HAS NOT YET BEEN SENT TO THE GOVERNOR'S DESK, AND AGAIN IT'S UNCLEAR AS TO WHETHER OR NOT SHE WILL SIGN IT.

BUT WHAT IS CLEAR IS THAT TIMING SEEMS TO BE A KEY FACTOR.

STATE LEGISLATIVE SPONSORS OF THE BILL SAY IF THE BILL IS ACTED ON AT THE VERY LAST MINUTE BEFORE THE END OF THE YEAR, THERE WILL LIKELY BE NO TIME FOR THE CHAPTER AMENDMENT PROCESS.

ONLY TIME WILL TELL HOW THIS ALL PLAYS OUT.

WE WILL BE FOLLOWING THE BILL'S ACTIONS AS THEY UNFOLD.

ELISE KLINE, NEW YORK NOW.

>> WELL, THAT DOES IT FOR THIS EDITION OF NEW YORK NOW.

THANK YOU FOR TUNING IN AND SEE YOU NEXT WEEK.

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