‘Uninsurables’ live with the constant worry of losing their lifeline

No other group awaits the Supreme Court’s decision on the national healthcare reform law and the proposed alternatives to it more nervously than the uninsurables — individuals unable to purchase health insurance because of a medical condition prior to an application for a policy. The pre-existing conditions that have rendered them uninsurable in some instances include pregnancies, injuries, diabetes, asthma, cancer and heart problems.

Kathy Watson, the owner of a patient transportation company in Florida, has two — an elevated blood count detected in 2003 and an incurable non-Hodgkins lymphoma diagnosed in 2009. She had gone without insurance since 2003, relying on visits to the emergency room to control her lymphoma, every request for a policy denied even through a small business plan via her self-owned company.

When the Affordable Care Act passed, its Pre-Existing Condition Insurance Plan (PCIP) became Kathy’s lifeline by allowing her to purchase health insurance for the first time in nine years. Nationally, 27 states administer PCIP for 62,000 enrollees that meet these requirements: six months or more without health insurance, rejection by insurers because of a pre-existing condition and US citizenship or permanent residency status. The typical enrollee is middle-aged without employer provided insurance and chronically ill with cancer, heart disease, degenerative bone disease, organ failure requiring a transplant or hemophilia.

PCIP is a temporary fix until 2014, when insurers will be required to sell policies to applicants without regard for their health history. But Kathy and other PCIP enrollees live with the worry of losing their coverage if the Supreme Court,  in its decision expected later this month, strikes down the health insurance mandate requiring everyone to purchase health insurance. The mandate is a concession to the insurance industry for covering the chronically ill such as Kathy.

"It’s scary," Kathy said in this Associated Press article introducing her story, the primary source of this entry. "They need to look at this carefully because it is going to affect a lot of people with a lot of bad conditions who are not going to have any health care coverage."

Adding to her concerns is an announcement this week by Republican presidential candidate Mitt Romney that only individuals with a history of uninterrupted health insurance should be guaranteed coverage by private insurers. "Gov. Romney supports reforms to protect those with pre-existing conditions from being denied access to a health plan while they have continuous coverage," said his campaign spokeswoman Andrea Saul to ABC News.

Kathy and other chronically ill individuals qualify for PCIP because of lengthy breaks in their coverage.  Their  next alternative is high-risk health insurance pools now operating in 35 states. The pools have their own issues with limited funding, enrollment caps and waiting lists. If the Supreme Court finds the healthcare reform law unconstitutional and nixes PCIP, some states are considering them  as the next best choice.

These tiers of options only escalate the complexities and instability tied to health insurance coverage for individuals deemed medically uninsurable. Apprehension consume their lives as they wait on decisions that could end their coverage this month, if and when there are major shifts in national politics in the next months, in 2014 when PCIP sunsets or beyond when legislators revise the laws again. The uncertainty of looming policy changes that could all cut their lifeline compounds the stress of disease management.

Survey asks: How good was your care?

Healthcare is constantly in the news lately, but if you've been to the hospital in the past year, has anyone contacted you about your views on issues such as quality of care or costs? The stories below highlight the contributions by approximately 1000 people to NPR's Facebook page after its joint poll with the Harvard School of Public Health and the Robert Wood Johnson Foundation revealed Americans' self-reported experiences within the US healthcare system.

Aimee Snyder, a 28-year-old graduate student, missed the enrollment deadline for her school's health insurance program by only one day and nearly lost her life delaying medical attention and costs. Her leg had swollen to twice its size and was turning purple. She developed shortness of breath as she postponed taking herself to the hospital for fear of the possibly massive resulting bill.

When she finally decided to go to the emergency room to address the problems with her leg, doctors discovered that a blood clot had been the source of her discomfort, and it had dissolved into pieces in her leg. The clots were headed for her lungs and could have taken her life within hours had she not gone to the hospital. That life saving ER visit cost Aimee $15,000 that she has since struggled to pay either by borrowing from family and friends or by redirecting student loan payments for the bill.

Andrew Dasenbrock, 32, chose to go forgo insurance coverage because he is self-employed and unable to afford the expense. He also ended up in the emergency room after suffering from severe stomach pains. Miscommunications between the two facilities (owned by the same hospital system) that provided his care resulted in charge overages for duplicate tests. Once his ordeal ended and his condition was diagnosed as a simple ailment, Andrew was in debt for thousands of dollars, still responsible for the unnecessary duplicate tests performed by the two hospitals.

Participants had all received care from a facility within the 12 months prior to the survey's administration. Among other findings, the poll revealed that patients with ongoing, chronic medical conditions "tended to have more concerns about costs and quality than people who aren't sick."

For more about the poll, read about the findings here. Additional information about the study is also available at this link.

Late-stage diagnosis galvanizes patient's advocacy for early detection

Colon Cancer: A Patient's Story

Trish Simon, who received her colon cancer diagnosis after giving birth at age 32, did not fit the textbook profile of a colorectal cancer patient because of her age and lack of family history of the illness.  

In her case, cramps gave way to severe pain and then to a full hysterectomy after scans revealed masses on her ovaries.  Further scans and tests eventually revealed that an aggressive tumor in her GI tract had metastasized from her colon to her ovaries. 

Early detection through a colonoscopy could have spared Simon the stage four colon cancer diagnosis that has been a part of her life for the past six years.  Today, she is an advocate for early colon cancer screenings, who has convinced fellow nurses and doctors within the Alexian Brothers Health System to donate time and equipment to screen high-risk patients.  

Simon's story almost mirrors that of former Today Show host Katie Couric who launched a campaign to encourage early screenings after her husband’s passing from colon cancer in 1998. Couric underwent a nationally televised colonoscopy in March 2000.  Since then, there has been a 20% increase in the number of colonoscopies performed, and we now know these facts about the procedure and colon cancer:

• Patients are sedated throughout the process, putting to rest some fears that the procedure is painful.
• Men and women are equally affected by colon cancer.
• Risk of colon cancer increases with age.
• Screenings should begin at age 50, unless there is a family history of colon cancer.
• A balanced, high-fiber diet, consistent exercise and overall healthy lifestyle reduce risks.

In spite of greater awareness, the Centers for Disease Control reported that colorectal cancer cases are often detected at late stage when treatment is less effective.

Read more on Trish's story here.

Vermont on Course to Single-Payer System by 2017

Vermont's road to its first in the nation, single-payer system named Green Mountain Care began within four months of Gov. Peter Shumlin's transition to power in 2011.  That year, the governor and legislators commissioned Harvard economist William Hsiao to conduct a cost-benefit analysis on the best healthcare options for the state.  After analyzing many models that included fully-private systems, Hsiao recommended the single payer because of its potential 25% savings to consumers, businesses and government.

This week, Gov. Shumlin signed into law a bill that builds another major section in Vermont's road to single payer by creating federally mandated by Obamacare healthcare exchanges, which will introduce a marketplace for individuals and small businesses to purchase policies from private insurers as well as multi-state and state-sponsored plans.  Uninsured  residents meeting specific income requirements will receive federal subsidies to purchase policies.

When Gov. Shumlin laid the first bricks in Vermont's road to a state funded and operated system, he also established a five-member board charged with setting reimbursement rates and delivering a financing plan by 2013.  Now that the details of the exchanges are being worked out for a 2014 launch, next step for the state is another federal waiver request to operate a fully functioning single-payer system by 2017.   

Preventive Care's Central Role as Massachusetts Considers Cost-Cutting Reforms

If imitation still is the sincerest form of flattery, Massachusetts received the ultimate compliment in 2010 when the federal government adopted a model of its healthcare reforms for the nation. In mid-April, the Commonwealth quietly marked the sixth anniversary of its law with health insurance coverage rates growing from 86.6% in 2006 to 94.2% in 2010.

Among the statistics the Washington Post includes in a recent slideshow on the law, the data on the accessibility of internal and family practitioners to patients raised questions on whether there needs to be greater buy-in by primary care physicians into the system.  The number of general internists willing to accept new patients dropped from 66% in 2005 to 49% in 2011. For family doctors, the figure was 70% in 2007 and 47% in 2011.

Perhaps the limited access to these physicians explains why the state saw minimal changes in residents' visits to the emergency room.  The Post collected statistics about ER visits from two sources:  One study in Health Affairs reported ER visits decreased by 3.5% between 2009 and 2010.  Another by the University of Illinois comparing Massachusetts ER visits to that of other states found an 8% decrease.

In many cases, primary care physicians are the healthcare system's gatekeepers.  They funnel patients to specialists for closer attention or prescribe the medications that heal a developing condition before it becomes serious.  Their focus is on preventive care, and they work with patients to ensure they receive appropriate screenings as they age.  Most importantly, they charge less than specialists and the ER.      

That primary care reduces costs is important for Massachusetts.  The state is entering the next phase of its reforms by focusing on healthcare spending.  It does so as healthcare costs comprise 41% of its fiscal year 2013 budget.  To contain costs, the legislature is taking up various bills that shifts the state toward global (flat fees) rather than current fee-for-service payments.

So what's the connection between primary care, fiscal reforms to the Massachusetts budget and chronic disease?  The answer is everything. While healthier people need access to preventive care, too, the chronically ill use the system more frequently no matter its shortcomings now. New fiscal reforms that boost access to primary care would implement an immediately useful policy that removes a significant barrier to better disease management.

Strong Industry Oversight Key to Healthcare Overhaul's Success

CareShare Network cannot say whether the new healthcare law is the antidote for the US’ healthcare woes. However, we hope the system will provide recourse for individuals with ongoing medical conditions when they are in conflict with their insurers over their care. 

In 2007, the CareShare Network blog featured the story of a woman who had appeared on Good Morning America.  She was living with a rare condition. In spite of her personal entreaties and letters of support from her doctors, her insurance provider would not cover the only medication capable of helping her.

Even with Good Morning America’s national spotlight on its policies, the insurer stood firm unwilling to reverse its decision. The woman was frustrated and baffled that one entity could hold such power over her life and health.  

In cases where doctors recommend one treatment and the insurer denies coverage, under the new law, will a strong third party oversee the appeals process?

Currently, a version of this arbitration process exists.  When private insurers make a decision patients believe is wrong, patients have the right to appeal.  Unfortunately, an appeal often ends in insurers affirming their own decisions:  The insurer claims their internal, impartial medical teams further reviewed its decision -- and approves of it.

These reviews can go as far as a state appeal board.  Some patients follow the process through its end at the state level. Others give up, exhausted and depleted at the thought of facing yet another battle with an uncertain outcome.

Our reason for recounting this story of old is to stress the need for an official, independent and strong appeal system implemented to protect patient consumers under the healthcare law. Otherwise, the national insurance mandate becomes a boon for private insurers, leaving consumers trapped between accepting inadequate private plans and no viable alternative when they fail them.

Healthcare Reform Law Overview

What to think and what to do?  As the nation awaits the Supreme Court’s decision on the Affordable Care Act, the healthcare reform bill passed by Congress and signed into law by Pres. Obama on March 23, 2010, CareShare Network looks at what’s at stake in the challenges to the law.  We also take a look at the changes the law will implement.

According to the New York Times in “Health Care Reform  and the Supreme Court (Affordable Care Act),” the challenges to the healthcare law hinge primarily on the individual health insurance mandate, which will require US residents to either purchase coverage or pay a penalty.  Assessments for penalties will begin in 2014 to be paid through 2015 tax returns. The government argues that the compulsory component of the law must stand because insurers will only provide coverage to all applicants without regard for preexisting medical conditions because of the mandate. 

The Supreme Court is addressing three other questions:

1. Should the court wait for the penalty to be levied in 2014 and paid in 2015 before considering any lawsuits?
2. What other parts of the law should be upheld or discarded if the Court strikes down the mandate?
3. Can the federal government require the states to expand their Medicaid rolls by raising the eligibility thresholds in order to offer health insurance coverage to more low-income families?     

With the aim of providing coverage access to the 49 million US residents without health insurance coverage at all, the law will also assess a penalty on large employers that do not offer health insurance and provide tax credits to smaller ones, compelling or incentivizing them into coverage provision for their employees.

It also creates health exchanges for individuals who must purchase policies in the individual market. The exchanges will provide information on private insurance options.  Some individuals will receive subsidies based on their income levels to purchase policies available in the individual market through the exchanges.