Welcome to the Illinois Health Matters Blog

Welcome to the Illinois Health Matters Blog. Our blog discusses various topics around how health care reform is affecting the people of Illinois. We present a variety of different perspectives from health care experts, both from our state, and nationally. For more information please visit IllinoisHealthMatters.org.

Friday, June 29, 2012

The Affordable Care Act Upheld: Addressing America's Health Care Crisis

Today’s Supreme Court decision in National Federation of Independent Business v. Sebelius means that the Affordable Care Act remains the law of the land. As Chief Justice Roberts said in the majority opinion, Congress has the power to enact the individual mandate and the Medicaid expansion, the two provisions challenged in the case.

People with insurance and people without insurance should be relieved that the process of reform can now move forward and make health care more secure. All of them have spent sleepless hours worried about the cost, lack of control, lack of choice, and absence of peace of mind associated with our current system. The Affordable Care Act (ACA) has tools to address all of these issues, although much still depends on decisions made at the state and local level, where officials must now continue implementing this important work.

The Court’s decision means that the benefits of the Affordable Care Act that are already in place will not have to be reversed.

Looking down the road a bit, the Court’s decision means that the full benefits of the law will be implemented on schedule:


Starting in 2014, the Affordable Care Act expands Medicaid to cover all 16 million Americans with incomes under 138% of the federal poverty level who are not currently eligible for Medicaid. The Act provides 100% federal funding to cover the costs of this expansion for the first years, and then settles in at 90% funding after five years. The Supreme Court’s decision today upholds Congress’s power to enact this expansion, and we encourage all the states to take full advantage of this wonderful opportunity.

The decision, however, also says that the federal government may not take away all of a state's existing Medicaid funding if it decides not to participate in the expansion. Medicaid law has always provided that, if states disobey the conditions Congress has imposed on the receipt of Medicaid funding, the federal government has several different remedies, one of which is to withdraw all federal funds. That remedy has never actually been used by the federal government, even though there have been many disputes involving state noncompliance with Medicaid conditions. So the threat that the federal government might deploy that remedy if a state failed to carry out the ACA's Medicaid expansion was highly theoretical. In today's decision, however, the Court ruled that a state's refusal to adopt the ACA's Medicaid expansion cannot trigger the removal from a state of all of its existing Medicaid funding. The ruling is unclear about exactly what the states' options are and what other remedies the federal government may have in those circumstances. As we study the decision further, we will address these Medicaid issues more in depth in future blogs. Of course, we urge all states to take advantage of the federally funded Medicaid expansion to bring coverage to their lowest income uninsured.

Tonight, people all over the country, men and women, of all ages, socioeconomic statuses, and political beliefs, can breathe a bit easier knowing that the reforms launched in March 2010 will continue and that America is moving toward quality, affordable, comprehensive health care for all.

John Bouman, President
Sargent Shriver National Center on Poverty Law

(This post was co-authored by Caitlin Padula and originally appeared in the Shriver Brief on June 28, 2012)

Thursday, June 28, 2012

Health Reform Upheld: A Summary of the Supreme Court's Decision

In a 5-4 decision, the Supreme Court handed down its long-awaited decision on the health reform bill, National Federation of Independent Business v. Sebelius, this morning. This historic decision has upheld the constitutionality of the Patient Protection and Affordable Care Act (ACA) as a whole (striking down only one penalty provision as unconstitutional), upholding measures improving access to and the quality of healthcare in the United States by expanding coverage, increasing benefits, and ensuring access to preventive services for many. This is a victory for communities and public health advocates throughout the country, and a relief for the many Americans already benefiting from some of the ACA’s programs.

Chief Justice Roberts delivered the opinion of the Court, and upheld the constitutionality of the individual mandate under Congress’s Taxing Power. [See here for a table of how all of the Justices' voted]. The individual mandate provision of the ACA states that individuals shall purchase health insurance, or pay a penalty. The Court considered the substance and application of the payment, and not its label. It was noted that the payment is collected by the IRS through the normal means of taxation. While undoubtedly intended to induce individuals to purchase health insurance, that a tax may have the purpose of influencing behavior rather than generating revenue is not problematic. This payment was likened to the taxes imposed on cigarettes for the purposes of smoking deterrence. Furthermore, the fact remained that the payment for failing to obtain insurance did not amount to a punishment for unlawful activity since it was not limited to willful violations of the mandate (as unlawful actions frequently are). Consequently, the Court concluded that mandate “leaves an individual with a lawful choice to do or not do a certain act, so long as he is willing to pay a tax levied on that choice.” Page 44.

The Court was unpersuaded by the argument that the individual mandate fell within Congress's Commerce Power. The Constitution grants Congress the power to regulate commercial activity, however, the Court found the mandate not a regulation of existing commercial activity, but instead compulsion to engage in commercial activity, an action beyond the limited power given to the government under the Constitution.

While the individual mandate was upheld, the Supreme Court, however, did strike down the penalty of the Medicaid expansion provisions of the ACA as unconstitutional. Under the Medicaid program, the federal government provides funds to participating states, and in return the states agree to follow certain standards. The ACA expanded eligibility for Medicaid, and required states to expand coverage of their state’s Medicaid programs in accordance with the ACA, or lose all federal Medicaid funding (typically 50 to 83 percent of the state’s Medicaid program spending).

Although the Spending Power grants Congress the authority to create cooperative state-federal spending programs such as Medicaid, states must voluntarily accept the terms of such spending programs. The Court held that, because the ACA penalizes states who choose not to participate in the Medicaid expansion by withholding existing federal funding under the Medicaid program, the provision was coercive. In choosing not to participate in the Medicaid expansion, states would lose over 10 percent of their overall budget (page 51), an effect the Court found to leave states with no real option but to accept the terms of the program, making participation non-voluntary and the program unconstitutional.

Furthermore, the expansion was found to be not a modification of an existing program, but instead the creation of a new one. Medicaid as initially enacted covered four distinct categories of people: “the disabled, the blind, the elderly, and needy families with dependent children.” However, the expansion changes the program into one that covers the entire nonelderly population with incomes less than 133 percent of the poverty level (or 138% FPL if you count the 5% modified adjusted gross income or MAGI). The Court found this not to be a mere modification of an existing program to provide healthcare to needy populations, but instead a transformation of the program into “an element of a national plan to provide universal health coverage.” Pages 53-54. The Court concluded by explaining that its opinion did not prevent the federal government from offering funds to expand Medicaid eligibility, only that states choosing not to participate in the new expansion could not be penalized through the loss of their existing federal Medicaid funding.

Today the United States has taken a great step towards reshaping the American healthcare system. The ACA and its reforms to the system will have a lasting affect on the way people receive and pay for personal medical care, improving access and quality while containing costs, and improving the health of our nation as a whole.

Amanda Swanson
Guest Blogger for Illinois Health Matters

*To read a summary of the Supreme Court hearings on the ACA, please see the post Supreme Court Wrap Up – A Law Student’s Perspective.

Wednesday, June 27, 2012

The Anticipated Fate of the Affordable Care Act: Post-Decision Resources

The long history of health care reform in the United States has finally arrived at the hands of the Supreme Court. Since its passing in March of 2010, the Affordable Care Act has stirred the nation with questions as well as uncertainties for its promising future. As we are just a day away from the long awaited outcome of the Supreme Court’s decision regarding the health care law’s constitutionality, it is crucial to maintain contact with the future implications of the ACA. Here is a list of a few resources to stay connected post decision, to make sure we keep moving forward and stay informed on healthcare reform in Illinois as well as nationwide.

Be sure to check back with Illinois Health Matters on Facebook and Twitter to keep up with additional Illinois-specific next steps!

Supreme Court of the United States Blog – providing up to date information as well as live blogging on what’s going on at the Supreme Court, with special focus on the ACA
http://www.scotusblog.com/

Families USA Conference Call: Supreme Court Decision and Beyond
http://fusa.convio.net/site/Calendar/451929173?view=Detail&id=100921


Supreme Court Decision: The Future of Small Business & Healthcare
http://www.eventbrite.com/event/3678909718

Statewide Conference Call - Campaign for Better Health Care
http://www.cbhconline.org/action/conferencecalls/ccall-registration/

Jaquelene Peysakhovich
Illinois Health Matters

Friday, June 22, 2012

Insurance Claims - Sounds Too Good to be True?

As we await the Supreme Court decision regarding the Affordable Care Act, which has already benefited hundreds of thousands of Illinoisans, we should not get too carried away by the health insurance giants UnitedHealth Group, Aetna and Humana announcement that regardless of how the Supreme Court rules, they will voluntarily continue some important consumer protections created by the law. These include preventive health care services without co-payments, coverage of children up to age 26 and elimination of lifetime policy limits.

Sounds too good to be true? Let's be clear: the insurance companies are only talking about voluntarily extending a few of the benefits they are now required to offer. This won't cost them a nickel because the benefits were cost-efficient to begin with and are already accounted for in their premiums. And without a law to require these provisions, there is no guarantee that the insurers won't yank them whenever they want.

What the insurance companies didn't say – and what they won't do – is the real story. They aren't saying they will stop discriminating against people with pre-existing conditions as the law requires beginning in 2014. That would be a big deal, because that part of the law will stop 129 million people with chronic conditions like diabetes, high blood pressure and asthma from being overcharged or being denied coverage. They also have not offered to keep covering children with pre-existing conditions -- a provision that has already taken effect and insurers have fought.

Lynda DeLaforgue
co-director, Citizen Action/Illinois

(This post originally appeared as a Chicago Tribune Letter to the Editor on 6/22/12)

Thursday, June 21, 2012

How Quinn can save the day on health care

There is plenty of confusion and debate about the Affordable Care Act. One element of the 900-plus-page legislation is crystal clear, however: Each state must establish an insurance exchange or the federal government will step in to fill the void.

The insurance exchange is the cornerstone of the ACA. It is an online marketplace for consumers to shop for insurance just as they shop for an airline flight. Those who qualify for federal health care subsidies will be able to use them only to purchase plans offered on the exchange. This will attract relatively healthy individuals and help drive down premiums for everyone shopping there.

When the spring legislative session adjourned recently in a welter of debate over pension funding, the possibility of bipartisan design of the Illinois' exchange vanished. Reasoning that part or all of the ACA could be stricken down by the Supreme Court this month, our legislators decided to delay action. But they're taking a grave risk: If the exchange-related parts of the ACA survive, Illinois will need to provide a detailed blueprint of an exchange by November. We have been awarded $38 million toward exchange planning. There's just one glitch—our legislators haven't authorized the establishment of an exchange.

If Illinois is to have any chance of a state-designed exchange, Gov. Pat Quinn immediately must issue an executive order to establish one.

The authority operating the exchange (an entity our state should design) would ensure that only plans providing the full range of benefits required by the ACA participate. A state exchange could take a more active role, limiting participation, for example, to the lowest-cost and highest-quality plans.

The broker industry is rightly concerned that exchanges will put them out of business, just like Orbitz and Expedia decimated the travel agent industry. Once the insurance market becomes transparent, individuals and small groups will need the services of brokers less and less, and insurers will not be willing to pay their high commissions. Cutting brokers out of the equation should reduce premiums by 5 to 7 percent—no small feat given how hard it is to cut health care costs.

We have $38 million in hand, and more funding is available if we apply by the end of the month. Illinois will be responsible for financing the exchange regardless of whether we operate and design it ourselves. Should we not seize the opportunity to use these funds to craft something that suits our circumstances and tastes?

The Legislature has effectively cut itself out of the picture. The question now is: Will the governor move in time to protect the public interest?

Leemore S. Dafny
Associate Professor of Management and Strategy
Kellogg School of Management, Northwestern University


(Original article posted here at Crain's Chicago Business, June 21, 2012)

Wednesday, June 20, 2012

Emergency Speak Out: Rally in Response to the U.S. Supreme Court’s Health Care Decision

The U.S. Supreme Court is expected to rule by Thursday of this week on whether two key provisions of the Affordable Care Act - the landmark health care law - are constitutional:
  • The requirement for people to have health insurance as of 2014 and
  • The expansion of Medicaid.
We can’t go backward on health care. Protections at risk include:
  • Ensuring over 200,000 Illinoisans with pre-existing conditions can buy quality and affordable health insurance.
  • Ensuring 102,000 youth under the age of 26 can stay on their parents’ insurance plan.
  • Creating a Health Benefits Exchange so 1.2 million Illinoisans and small businesses can shop for quality and affordable health insurance in a transparent and competitive marketplace.
As we prepare for the Supreme Court decision on the Affordable Care Act, we need to keep mobilizing our base, getting stories to the media on the impact of the ACA, and continue pressuring our state and Federal elected officials. With that in mind, we are planning an Emergency Speak Out on the day of the decision.

When: The Day of the Decision, 5 PM (rain or shine)
(Decision can be any day in June: likely to be Thursday June 28)

Where: Daley Plaza, Chicago
(Located in Chicago on Washington Street, between Dearborn and Clark)

Regardless of the outcome, we will call upon Governor Quinn to move forward on health care reform, including the creation of the Health Benefits Exchange. We must speak out – We must win. For more information, contact me at info. below.

John Gaudette
Citizen Action - IL
(312) 427-2114 x208
john@citizenaction-il.org
Twitter: @citizenactionil

Tuesday, June 19, 2012

Small Business Health Care Consortium Touts Importance of ACA to Illinois Firms

The newly formed Small Business Health Care Consortium (SBHCC) announced today the results of recent Illinois polls regarding the small business provision of the Affordable Care Act and their call for Governor Quinn to establish an Illinois Insurance Exchange with key principle provisions by issuing an executive order.

The polls, conducted in conjunction with the Small Business Majority, found that:
  • 63% of Illinois small business owners want to see the Affordable Care Act upheld, with minor or no changes. After learning more about the specifics of the law, support for keeping it as is or with minor changes rose to 68%.
  • A 73% majority of small business owners say they would use or consider using the state exchange, and seven out of 10 Illinois small business owners support the state in applying for federal aid under the Affordable Care Act to set one up. 
  • A majority of business owners say they’d be likely to purchase health care for their employees through a state exchange because it is the only place they can receive a tax credit beginning in 2014. 64% of those polled said qualifying for the tax credit would make them more likely to provide or continue offering coverage to employees.
(Links: IL ACA Poll Mini Report and ACA Wrapup poll)

Small businesses are the backbone of Illinois’s economy. In 2010, 203,600 businesses in Illinois had 25 or fewer workers, according to the Small Business Majority. The SBHCC, formed earlier this year, represents the voice of small business leaders throughout Illinois on health care reform.

Present SBHCC Steering Committee members include the Illinois Black Chamber of Commerce, Illinois Hispanic Chamber of Commerce, National Association of Women Business Owners – Chicago Chapter, McCormick Chamber of Commerce, Women’s Business Development Center, and small businesses including Old Mexico Restaurant (Rock Island), Gregg Florist (Peoria), Wirehead Technology (Chicago), Second Act Cancer Recovery Boutique (Chicago), MCCE Investments (Springfield), Linda Forman CPA PC (Evanston), and H.A King & Associates (Chicago.)

“Forming the Small Business Health Care Consortium to represent the diversity of small businesses throughout the state is overdue. I am working with the Small Business Health Care Consortium to ensure that all small businesses can afford health insurance,” said Howard Lee of Wire Technology in Chicago, a SBHCC steering committee member.

Another provision of the ACA is the development of a competitive healthcare marketplace, or insurance exchange, in each state. Small businesses want to support our employees and their families by being able to provide them with the quality, affordable healthcare they deserve, but the high costs make it difficult or impossible for many of us to do that. We need a strong marketplace to give us more control, quality choices, and better consumer protections when buying insurance - just like the big guys get.

Pattie Sheehan, Certified Mastectomy Fitter and sole proprietor of Second Act Mastectomy Boutique in Chicago, serves cancer patients and survivors. “Every day I see and hear from women who did not catch their cancer early because they did not have access to healthcare. Women who battle cancer also work at small businesses and that means that they are less likely to have health insurance coverage, just because their employer is small. It is time for the inequality of insurance access to be erased and for the needs of small businesses to be met so that our employees can afford good insurance. That is why I have joined the Steering Committee of the Small Business Health Care Consortium.”

Since 2010 under the ACA, companies with fewer than 25 employees and average employee wages of less than $50,000 can get tax credits for the health insurance they provide their employees. These tax breaks have already lightened the load on small businesses so we can get back to what we do best...creating jobs that will stay here in our communities.

“I am the owner of MCCE Investments and I also own several Subway stores in the Springfield area. The main reason I am spending time on this project, the Small Business Health Care Consortium, is to be sure small business has a voice in the process from the beginning. We have to be sure health care for all Americans is not done on the backs of small business but must be shared by all,” said Mark Burris.

“Contrary to political spin and popular belief, small business owners in Illinois do not want the U.S. Supreme Court to throw out the Affordable Care Act. Illinois small businesses see this law as helping everyone have coverage and bringing down healthcare costs—something that has been one of their top concerns for years. We hope Supreme Court justices understand how important this law is to small businesses who need relief from high healthcare costs,” said Jim Duffett, Executive Director of the Campaign for Better Health Care.

Duffett continued, “Since the General Assembly has abdicated its responsibilities, Governor Quinn needs to step up to the plate and enact an Executive Order to begin the process for an Illinois Marketplace (exchange). Small businesses are committed in taking personal responsibility; it is time for our political leaders to do the same.”

Right now, Illinois could access over $200 million in federal funds to implement the new marketplace. It won't cost the state a penny if we use these federal funds. This past legislative session, the General Assembly took no action on implementing a marketplace in Illinois. This means the federal government will implement one for us, unless Governor Quinn takes immediate action.

David Whitaker, Chair of the Health Committee for the Illinois Black Chamber of Commerce, said “Small businesses are diverse throughout Illinois and yet we all have the same problem when it comes to buying health insurance—it is very difficult and we spend more for it than larger businesses. The Illinois General Assembly failed this past session to enact legislation to establish an Illinois marketplace, or insurance exchange. It is time for action and leadership.”

“The SBHCC is calling on Governor Quinn to sign an executive order to set the standard for this
marketplace and it must include the following principles:

1) No insurance industry representataives on the Governing Board.
2) The right to negotiate rates with insurers - there must be real cost containment measures.
3) The Insurance industry must pay for the Marketplace, not small businesses and consumers.”

Joyce Harant, SBHCC Project Director said, "Small business owners are so busy keeping their businesses operating that they have very little time to navigate what is happening about health care reform. Most of them wish they could afford health insurance for their employees and yet when the rubber meets the road, for many of them the obstacles are too great. My hope is that we can learn the needs of small business owners and, in a collective way, make sure their needs and opinions are heard and become part of the legislation passed in Illinois."

Full statements by small business owners on today's telebriefing are available via Kathleen Duffy. The audio of today's telebriefing is available on the Campaign for Better Health Care's Audio Archive.

Thursday, June 14, 2012

Today is World Blood Donor Day

The Affordable Care Act includes many provisions aimed at increasing individuals’ ability to access health care.  However, even if the financial and other external barriers are overcome, problems with accessing health care will still exist if health care facilities do not have the supplies they need to treat patients, including sufficient blood products.  Today is World Blood Donor Day, a day to celebrate Illinois’ blood donors and inspire those in good health to begin donating blood.

Every year the transfusion of blood and blood products helps save millions of lives.  Transfusions also improve the quality of life and life expectancy for patients suffering from life-threatening conditions, and support surgeries and complex medical procedures such as cancer treatments.  All of these benefits cannot be realized without timely access to safe blood.  Although 60% of the population is eligible to donate blood, only 5% actually do.  The American Red Cross has reported that blood donations are down for 2012, and more donations are needed now to ensure there will not be any blood shortages this summer.

The World Health Organization designated June 14 as World Blood Donor Day, an international event to raise awareness of the need of safe blood and to thank voluntary blood donors.  This year’s theme is “Every blood donor is a hero.”  Individuals who choose to donate even when it may not be convenient put the needs of others before their own in a life-saving gesture of human solidarity.  Blood donors are indeed heroes; the donation of one pint of blood can save up to three lives.  To celebrate this day, organizations all over the world are planning events to raise awareness and thank donors.  LifeSource, Chicagoland’s blood center, created a Blood Donor Photo Tribute to thank those heroes who save lives by donating regularly.  The Red Cross, Nexcare, and supermodel Niki Taylor have partnered together to celebrate and thank blood donors by offering limited edition Nexcare GIVE bandages to those who present to give blood this June.

Whether you’re considering donating blood for the first time or are a regular donor looking to schedule your next appointment, knowing how to get started can make the donation process much easier for you.  Most organizations enable you to schedule appointments online, and you can choose from a list of donation centers and blood drives close to you to find the location and date that is most convenient.  You could also host a blood drive at your place of work, worship, community center, or school.  All you need to provide is a room or a place to park a donor coach vehicle, some tables and chairs, a contact person and a couple volunteers to recruit donors. 

Additionally, Illinois law also helps to make blood donation more convenient for people by permitting eligible employees to, upon request, use one hour of paid leave to donate blood.  This is available to full-time employees who donate blood and who have been employed for six months or more by any unit of local government, board of election commission, or any private employer in Illinois who has 51 or more employees.  Your employer can provide you with more information about whether this option is available to you and, if it is, what documentation you will need to provide to take advantage. 

It is easy to become an everyday hero and help save lives right in your own community.  To be eligible to donate blood, you must be at least 17 years old, weigh at least 110 pounds, and be in good physical health.  Individuals with certain health conditions or who have engaged in certain behaviors or traveled to certain places may be ineligible to donate.  Please see the websites for the American Red Cross (national), LifeSource (Chicagoland), the Central Illinois Community Blood Center (central Illinois), or Community Blood Services of Illinois (east-central Illinois) for more information on eligibility and how you can donate.

The selfless act of donating blood is incredibly important to the health and well-being of Illinoisans, and Illinois Health Matters wants to thank all of these life saving heroes.

Amanda Swanson
Guest Blogger

Thursday, June 7, 2012

The State Budget Aftermath - What's Next?

On May 25, 2012, the Illinois legislature voted to pass Senate Bill 2840, which will make drastic cuts to the state’s Medicaid program, in order to help close a $2.7 billion deficit. The news has been confusing, but the bottom line is that many of the programs which provide necessary health coverage to vulnerable populations of Illinoisans have been terminated or reduced, which will result in thousands of people losing health care coverage.

While those cuts are devastating, we remind ourselves that there are over 2 million people covered by Medicaid in Illinois—many of them covered through important expansions including the 100% Campaign, All Kids, Health Benefits with Disabilities, and FamilyCare. These coverage expansions largely remain intact and protected. We are heartened by the fact that our advocacy efforts, along with our colleagues, also staved off worse proposed cuts including the loss of coverage for tens of thousands of undocumented children with no health care alternatives.

Along with Senate Bill 2840, several other bills were passed which also affect Illinois’ Medicaid program including:

  • HB5007: Amends the December 2010 Medicaid reform law that placed a moratorium on Medicaid expansions until 2013. This amendment extends that moratorium for two more years, until January 25, 2015. However, the bill also creates an exception for expansions that are federally approved and funded solely by federal and local government funds. This exemption was specifically designed to allow the Cook County 1115 waiver proposal (currently waiting for approval from CMS) to move forward, which would expand Medicaid to 250,000 low income, currently uninsured Cook County residents.
  • SB 2194: Limits the number of unpaid Medicaid bills that can be rolled over from one year to the next, capping the dollar amount at $700 million in FY 2013. SB 2194, HA 3 sets more substantial definitions of charity care, so that hospitals will know what services they can provide to meet that definition, and thus retain tax exempt status 
  • SB 3261 HA 2: Sets standards for eligibility for free care at non-profit hospitals

Moving forward toward the implementation of health care reform in 2014, Health & Disability Advocates will continue working to ameliorate the effect of these cuts by counseling individuals on their coverage options and training providers to build their capacity to help their patients access alternative coverage. There is not a solution to every cut but, in many instances, there are alternative programs to get necessary health care coverage to our populations.

We think it is important that while we all continue to fight against these cuts, we must immediately spring into action to help individuals transition to other coverage if at all possible.

For example, the elimination of the Illinois Cares Rx program is expected to affect over 100,000 low income older adults and people with disabilities who use the program to help them pay the premiums, deductibles, and cost-sharing of the Medicare Part program. If you or your clients have Illinois Cares Rx stories to share, please have them submit them to a special Facebook page here.

We have scheduled a webinar for June 15th to train providers how to ensure that their clients and patients use past medical bills to meet Medicaid spenddown, thus making them eligible for the federal Extra Help program which will cover all cost-sharing. We expect that tens of thousands of Illinois Cares Rx recipients could become eligible for Extra Help under this strategy.

We will continue to advocate as well as to move forward by counseling individuals, training providers and providing technical assistance to our partners to ensure that we maximize health care coverage and access in every way possible.

Stephanie Altman
Programs & Policy Director
Health & Disability Advocates

Monday, June 4, 2012

Illinois Health Information Exchange: Legal and Policy Issues

The adoption of electronic health records and a health information exchange (HIE) in the U.S. healthcare system, and the improvements in quality and cost that will result, has caused quite a stir across the country.  Even amidst all of the excitement and optimism, many people are concerned about potential negative consequences, and much of the controversy centers around the interplay between individuals’ privacy rights and the effectiveness of these new technologies.

The Illinois Office of Health Information Technology was created in 2010 by executive order to coordinate and direct Illinois HIT and HIE initiatives.  The OHIT and the Illinois Health Information Exchange Authority are working together to create the Illinois HIE (ILHIE).  To ensure that patient privacy rights are adequately protected, OHIT created an ILHIE Legal Task Force to identify and address Illinois laws raising complex challenges to the exchange of health information.  

While the Health Insurance Portability and Accountability Act’s (HIPAA) Privacy Rule lays out federal requirements governing the disclosure of a patient’s protected health information (PHI), this law sets a floor.  States are free to enact more strict privacy regulations, and Illinois has done so in a number of areas. The Legal Task Force has created ten workgroups, each assigned a specific disclosure issue which the group will investigate and then recommend improvements to the Illinois disclosure laws in that area.  These workgroups include PHI pertaining to behavioral health, substance abuse, HIV/AIDS status, and genetic testing. 

In addition to the legal barriers, OHIT is currently investigating key policy questions impacting the information put in the ILHIE and access to information.  

The first concern is whether patients should be granted a choice as to whether his/her information will be included in the ILHIE for use by health care professionals and others, and the extent of the effect given to this choice.  Next, if patients are given this choice, the question becomes whether all patients should be given the chance to affirmatively decline or consent to the inclusion of their PHI in the ILHIE.  If a patient decides he/she does not want to use the HIE, the permissibility and/or extent to which the patient’s data can be collected by the ILHIE for limited mandatory reporting (such as public health reporting) must also be addressed.    
Another issue arises when a patient may desire that only specific aspects of his or her medical record are not exchanged, or that specific providers can be denied access to the information, and whether this request can be accommodated or whether the patient’s entire record must then be excluded from the ILHIE.  Finally, if patients are given the choice as to whether or not to participate in the HIE, it must be determined what requirements, if any, should be placed on health care providers to inform the patient of the HIE and answer any questions, thereby ensuring the patient’s choice is truly meaningful.

Aside from the questions surrounding whether to include information in the HIE, barriers arise with respect to linking up the information within the HIE to the specific patient seeking health care.  One question being addressed is whether the ILHIE should use a unique patient identifier to enable patient records to be accumulated and matched to the patient with accuracy.  This is an important issue: problems can arise when other identifying information (such as name, birthday, gender, zip code, and/or all or part of the social security number) is used for this purpose, because patients having data in common, the entering of data in different formats at different facilities, and data entry errors can all prevent accurate record matching.  If a unique patient identifier is not created for the ILHIE, the question then becomes whether regulations should be imposed upon providers to ensure a certain degree of patient matching accuracy is achieved with the use of their EHR system with the HIE. 

The final policy question being addressed by OHIT concerns whether Illinois should enact its own laws and regulations governing patient rights with respect to their EHR, to supplement the rights already given to patients through federal law such as those giving patients the right to access their own medical records and request corrections.

For more information on the HIE or your information privacy and security, please visit the education page of the ILHIE or the Office of the National Coordinator.

Amanda Swanson, J.D., LL.M.