Our readers weigh in: Supreme Court decision on ACA

As the Supreme Court’s decision on the Affordable Care Act approaches, we asked our readers to weigh in on what they think is going to happen. Turns out you have a lot to say! Here are a few of the great comments we got on Facebook.

(more…)

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The Overlooked Mandate Issue

Mary R. Grealy

By Mary Grealy. While the U.S. Supreme Court was hearing oral arguments this week on the constitutionality of the individual mandate provisions of the Affordable Care Act, another serious concern about the mandate didn’t involve constitutional issues and stayed relatively unnoticed.

Is the individual mandate sufficient to achieve its intended goal, to bring healthy Americans into the health insurance pool?  In answering this question, the stakes are high.  If millions of currently uninsured Americans choose to remain without coverage, and simply pay the noncompliance penalty instead, serious questions are raised as to whether other insurance reforms can take effect – most importantly, eliminating pre-existing conditions as a barrier to coverage – without destabilizing the marketplace.

This is a legitimate worry.  In 2014, a person who chooses to remain uninsured would be penalized $95 or one percent of adjusted taxable income, whichever is greater.  And even when the penalty is fully implemented in 2016, the penalty will be the greater amount of $695 or 2.5 percent of adjusted taxable income.  These penalties will still be less than the cost of purchasing health coverage.

As University of Illinois law professor Richard L. Kaplan put it, accurately, “(A) person might choose not to buy health insurance, opting to wait until something medically unfortunate happens.  Insurance companies will not be able to refuse her at that point, a situation that might imperil the private insurance market.”

Even if the Court upholds the constitutionality of the individual mandate, lawmakers can’t complacently assume that it will be strong enough to move uninsured citizens into the insurance marketplace.  It would be worth studying the efficacy of other incentive programs, such as those used by the Medicare Part D prescription drug program.  Part D has utilized both limited enrollment windows as well as higher costs for those who delay enrollment.

The goal of incentivizing Americans to acquire health insurance is a good and necessary one.  It’s necessary, though, to keep in mind that the constitutionality of the individual mandate may be the most visible issue, but it’s far from the only one.

The post above ran first on the Prognosis Blog on March 30th.


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The Economic Impact of the Pill

The following blog post orignally ran on The New York Times Economix blog on March 6th.

By Anne Lowrey. The recent controversy over contraception and health insurance has focused on who should pay for the pill. But there is a wealth of economic evidence about the value of the pill – to taxpayers, as my colleague Motoko Rich writes, as well as to women in general.

Indeed, as the economist Betsey Stevenson has noted, a number of studies have shown that by allowing women to delay marriage and childbearing, the pill has also helped them invest in their skills and education, join the work force in greater numbers, move into higher-status and better-paying professions and make more money over all.

One of the most influential and frequently cited studies of the impact the pill has had on women’s lives comes from Claudia Goldin and Lawrence F. Katz. The two Harvard economists argue that the pill gave women “far greater certainty regarding the pregnancy consequences of sex.” That “lowered the costs of engaging in long-term career investments,” freeing women to finish high school or go to college, for instance, rather than settling down.

The pill also helped make the marriage market “thicker,” they write. By decoupling sex from marriage, young people were able to put off getting married and spend more time shopping around for a prospective partner.

Those changes have had enormous impacts on the economy, studies show: increasing the number of women in the labor force, raising the number of hours that women work and giving women access to traditionally male and highly lucrative professions in fields like law and medicine. (more…)


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Insurance Coverage of Contraceptives

The following post ran on The Kaiser Family Foundation’s Notes on Health Insurance and Reform on February 21st.  It was authored by Alina Salganicoff and Usha Ranji.

The last several weeks have been a roller coaster ride for those interested in insurance coverage of contraceptives. In this post, we answer some of the key questions about the new contraceptive coverage policy generally, and more specifically, how it will be applied to religious organizations.

Why is contraceptive coverage part of health reform?

When the Affordable Care Act was passed, it included considerable attention to preventive care, for the first time stipulating that new private plans cover a wide range of recommended clinical preventive services to plan holders without cost-sharing. Specifically, this section of the law (2713) requires that private plans cover services that receive a strong recommendation from the U.S. Preventive Services Task Force (USPSTF); vaccines recommended by the Advisory Committee on Immunization Practices (ACIP); preventive services for children recommended by Bright Futures guidelines for pediatric preventive care; and “with respect to women,” new services that will be identified by the Health Resources and Services Administration (HRSA). In 2010, the Department of Health and Human Services (HHS) requested that the Institute of Medicine (IOM) convene a committee of experts in women’s health and prevention to identify gaps for women in the current preventive recommendations.

The IOM committee identified eight new preventive services for women, including screening for intimate partner violence, well woman visits, breastfeeding supports as well as the inclusion of contraceptive services and supplies, including all methods approved by the Food and Drug Administration. These recommendations were adopted by HHS in August 2011. Contraception is also recommended as a part of health care for women by the nation’s leading health care professional associations, including the American Medical Association, the American Congress of Obstetricians and Gynecologists, the American Academy of Pediatrics, and the American Public Health Association.

This new provision has significant implications for access to contraception and affordability for millions of women. It is estimated that half of pregnancies in the U.S. are unintended, among the highest rate among developed nations. The vast majority of women in the U.S. have used a contraceptive at some point in their lives to prevent unintended pregnancy, plan future pregnancies, or space childbearing. Cost-sharing requirements, such as co-payments and co-insurance, have been shown to curtail utilization of preventive services. (more…)

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Americans’ new normal in health: paying attention and responding to costs

Jane Sarasohn-Kahn

By Jane Sarasohn Kahn. The passage of health reform in the U.S. has not enhanced peoples’ confidence in the American health system. In fact, U.S. health consumers’ high confidence level in the future of employer-sponsored health benefits has eroded over the past ten years, according to the Employee Benefit Research Institute‘s (EBRI) 2011 Health Confidence Survey: Most Americans Unfamiliar with Key Aspect of Health Reform.

Most people are dissatisfied with the U.S. health system overall, with 27% of U.S. adults rating the system as “poor” and 29% giving a rating of “fair.”

High costs may be at the root of peoples’ dissatisfaction with the U.S. health system. Only 18% of people are satisfied with the cost of health insurance; only 15% satisfied with the cost of health services not covered by insurance.

EBRI looked into peoples’ health-consumer behaviors, detailed in the chart. Most people who have visited doctors ask them to explain why a test is needed, as well as inquire about risks of treatments and medications and their success rates. Nearly one-half of people ask about less costly treatment options often or always.

Consumers also adjust their health care utilization when facing higher health care costs:

  • 74% of U.S. adults try to take better care of themselves
  • 69% choose generic drugs when available
  • 64% talk to the doctor more carefully about treatment options and costs
  • 59% go to the doctor only for more serious conditions or symptoms
  • 44% delay going to the doctor
  • 36% switch to over-the-counter (OTC) drugs
  • 34% look for cheaper health insurance
  • 31% look for cheaper health providers
  • 25% skip medication doses or don’t fill prescriptions.

Health care costs are eating into peoples’ savings contributions: 56% of people say they have decreased contributions to other savings due to health cost increases, and 33% have difficulty paying for other bills beyond health care.

The Health Confidence Survey interviewed 1,001 U.S. adults over age 21 in May and June 2011 via telephone. (more…)

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USA Today and Medicare: The Hits, the Misses and the Absences

Mary R. Grealy

By Mary Grealy. Yesterday, USA Today devoted its front page to a topic many of us have been discussing intensely for some time – how to address Medicare’s escalating costs. 

The newspaper listed five ways to “squeeze” Medicare spending and then discussed the political arguments for and against each.  Some, such as gradually raising the Medicare eligibility age from 65 to 67 and requiring higher-income beneficiaries to pay full premiums for their Medicare Part B (physician services) and Part D (prescription drug) coverage are recommendations that the Healthcare Leadership Council has made to the congressional deficit reduction “super committee.”

But, in a number of ways, the USA Today article missed the mark:

In discussing cutbacks to Medicare providers, including physicians, hospitals and pharmaceutical companies, the newspaper expanded on the likelihood that those health sectors would strenuously argue against any cuts, but there was no reporting on the impact those reductions would have upon beneficiaries.

This is a pet peeve of mine, as I’ve noted previously.  Too often, both politicians and commentators speak of the value of cutting providers instead of patients, obscuring the fact that reduced payments to providers has an impact on both the accessibility and quality of healthcare.  If, as the Obama Administration has proposed, pharmaceutical companies are required to send over $100 billion in rebates back to the government, can there be any other outcome besides higher prices for consumers and less money available for research and development of new innovative medicines? (more…)

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August 2011 Man of the Month: Orrin Hatch

, U.S. Senator from Utah.

U.S. Senator from Utah. (Photo credit: Wikipedia)

This month we salute Senator Orrin Hatch (R-UT), who worked alongside Senator Ted Kennedy (D-MA) to create a new plan to provide health insurance for millions of children who would otherwise lack the most basic health care.  For putting partisanship aside to realize his vision of a better future for our children, Senator Hatch has more than earned the Man of the Month honor.

August is a special month for many childhood health advocates. It is Children’s Eye and Health Safety Month and Children’s Vision and Learning Month.  However, without Senator Orrin Hatch, these causes may not be celebrated by the poorest children in America. Hatch wrote the State Child Health Insurance Program, or “SCHIP”, and co-sponsored the bill with Ted Kennedy with the support of First Lady Hillary Clinton.

The SCHIP bill was initially defeated.  With a lack of support from fellow Republicans and from the executive branch, a devastated Hatch said, “I think the President [Clinton] and the people in the White House caved here.”  However, Kennedy and Hatch did not give up and managed to revive the bill and eventually get it passed.

In 2007, a study by Brigham Young University and Arizona State found that children who disenroll from public health insurance often wind up in larger emergency care situations, costing tax payers more than children who remain on SCHIP (see Impact of Medicaid Disenrollment on Health Care Use and Cost), refuting arguments to the contrary by many of Hatch’s fellow Republicans. His political affiliation was no match for his outrage over the fact that so many children could be allowed to fall through the cracks.

Orrin Hatch once said, “Children are being terribly hurt and perhaps scarred for the rest of their lives” and that “as a nation, as a society, we have a moral responsibility” to provide coverage. Thanks to his work, SCHIP provides that coverage – for 7 to 10 million children every year.

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You’d better shop around: huge price variances for an MRI in your town

Jane Sarasohn-Kahn

My mama told me you’d better shop around, as Robinson also told us. We now know it pays to shop the prices for digital imaging. The price of an MRI of the brain ranges from a low of $825 to a high of $3,600 within the Southeast region of the U.S. In the Northeast, the low is $1,540 and the high, $3,500. There are similar price “spreads” in other regions of the country for the same imaging study, and across other imaging modalities such as PET and CT.

The greatest regional variances by service type are for MRI scans of the brain, varying 747% between a low price of $425 in the Southwest to a high of $3,600 in the Southeast, based on an analysis from change: healthcare‘s Q2 2011 Healthcare Transparency Index.

USA Today reported on this study on June 30, 2011. Christopher Parks, founder of change:healthcare, pointed out that it’s not uncommon to find inter-regional differences of health prices. However, this is happening ”within a 20-mile radius in your own town,” Parks points out based on his firm’s research.

change:healthcare launched the Healthcare Transparency Index (HCTI) in Q4 2010 to analyze health claims data for various health care services and provide health care buyers with data about cost trends. The tool helps people identify savings opportunities for various health care products and services such as prescription drugs, dentistry, physician office visits, physical therapy, and imaging.

(more…)

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An Interview with Disruptive Woman Stephanie Cohen

By Hope Ditto. It’s still too early to tell what exactly will come of the repeal vote on the Hill this week, and what it will mean for health care coverage. Whether the law is repealed altogether, or whether supplemental bills changing different parts of the original legislation are passed, only time will tell. Whether Obama will veto the repeal act, should a repeal make it to his desk (okay, that’s pretty certain, but stranger things have happened), or whether the Republicans would be able to whip enough votes for an override, we can only venture guesses. Only one thing is for certain – there has never been a more confusing time to buy health insurance.

That’s where health care benefits consultants – like Disruptive Women blogger and Golden & Cohen benefits consulting firm co-founder Stephanie Cohen — come in the picture. Cohen is an expert in the field of health insurance and familiar with all of the changes being implemented (no easy feat). Along with the other consultants at her firm, Cohen helps to find the best possible coverage for individuals and groups (insurance world speak for families and companies), taking into account each entity’s specific needs and financial situations.

I recently had the opportunity to sit down with Stephanie and ask her about all things health care – including her tips for choosing a health insurance plan. Here’s what she had to say.

Question (Q): Why does a person or a company seek out a benefits consultant as opposed to just securing their own health insurance?

Stephanie Cohen (SC): A benefits consultant is an expert in health insurance; most people are not. Purchasing a health insurance policy is like preparing your tax returns; what one puts together for his or herself may be very different from the next person based on many variables both known and not known. Only an expert, who understands all the questions to be asked, can determine the appropriate policy that will yield the greatest return. Health insurance matters so much; why would you risk making a bad decision based on your own inexperience?

Q: Obviously when you say health care these days, one topic and only one topic comes to mind – health care reform (and subsequently, recent attempts to repeal it). In what way will the final decision on the Hill regarding repeal impact your work?

SC: Uncertainty begs for good consultation. The more things are in flux, the more consultants are needed.

Q: Speaking of health care reform and the happenings on the Hill of late, how would you explain the pros and cons of the Affordable Care Act to someone less familiar with the health care/health insurance industry?

As with anything, there are pros and cons to the Affordable Care Act, and its repeal. On the one hand, it allows people with pre-existing conditions to get coverage at reasonable (or at least comparable) rates, it allows dependents to stay on their parents’ plan until the age of 26 and it eliminates co-pays on routine physicals. But, it is driving the cost of all insurance up, it is not friendly to business, it won’t bend the cost curve and it is creating a shortage of consultants due to changes in compensation. In the end, it is a matter of weighing the costs and the benefits and accepting that there is still work to be done. (more…)

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Informed Patient: Tips for questioning health care costs in today’s health care system

The following post is written by guest blogger Joanna Fief. Joanna works at Regence BlueCross BlueShield and encourages you to visit the company’s blog and website about health care costs at www.WhatsTheRealCost.org to learn more.

By Joanna Fief. About two years ago in the wee hours of the morning, I found myself in a local emergency room with severe stomach pain, incessant vomiting and dehydration.  It wasn’t pretty, and I was desperate for something – anything – to ease my pain and stop my vomiting. 

Gratefully, within minutes of receiving an IV with medications for pain and nausea, my symptoms subsided.  After a couple of blood tests that all came back normal, I was discharged.  The ER doctor said I probably just had a virus.  I wish …

Over the next six months, I lost 20 pounds, and had repeated bouts of stomach pain and vomiting.  After another ER visit, countless doctor visits, an ultrasound, an x-ray, a CT scan, an endoscopy and a gastric emptying study, I was diagnosed with gastroparesis.  Gastroparesis is a disorder where food moves slowly – or sometimes not at all – through the stomach and digestive tract.

Thankfully, today my condition is well-managed, and I feel pretty good.  However, it took me until last month to finish paying my medical bills – and that’s with good insurance.  Although I definitely don’t mind paying for the care that I received, I do wish medical pricing was more straightforward and transparent.

My mother is a nurse and I work for a health insurance company. Until I got sick, I considered myself pretty savvy about the health care system.  Over the course of my medical journey, though, I realized even with “insider’s knowledge” it can be extremely difficult to navigate the system, know the right questions to ask, and make informed decisions about cost and quality of care.

Not until after I got my first emergency room bill did I find out that while the hospital was in-network, the doctor was out-of-network.  Only when I was lying on the gurney getting ready to be sedated for my endoscopy did it occur to me to ask the doctor how many of these procedures she had done (thankfully, more than 5,000).  And, not until a few months ago, did I even consider that I might have shopped around for the best price on a CT scan.  I always felt like I was one step behind. 

The new health reform law promises to change the health care experience and stem rising health care costs, but based on my experience, we shouldn’t underestimate the power each of us holds to drive that change.  If I had it to do over again, I would ask more questions about the cost and reason for each procedure – while there was still an opportunity to influence the outcome.  The questions might make others uncomfortable, or as I found, the answers might not be readily available, but it’s the best way to be your own advocate.

Learn from my experience.  When your doctor suggests going to the ER for a non-emergency x-ray just because it’s faster, you might think twice before going along with it.  Below are five simple questions from www.WhatsTheRealCost.com, a website dedicated to helping people make more informed health care cost decisions, you can ask to create options and protect your pocketbook.

  1. How much does that cost? 
  2. Is that really necessary? 
  3. Is there a cheaper option? 
  4. Is there a generic for that? 
  5. Has anybody out there had this before? 


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  • August 2nd, 2010 Health Reform: My Small Business Impact
    By Glenna Crooks
  • Health Reform Updates and Resources

    Robin Strongin

    By Robin Strongin. No such thing as a summer vacation for those Inside the Beltway tasked with implementing and explaining health reform.

    In case you were looking for some summer-time reading, the new insurance portal, http://www.healthcare.gov/ just launched (a few hours ahead of its July 1 deadline).  You can work your way through 500 pages of content and state-by-state listings of more than 5,500 open health insurance products.

    And if that’s not enough to quench your health reform thirst, The new National Prevention, Health Promotion and Public Health Council, created by the Affordable Care Act, submitted its first status report to Congress on July 1.

    Chaired by Surgeon General Regina Benjamin and composed of senior government officials across federal departments and agencies, the Council is charged with elevating and coordinating prevention activities and designing a focused strategy across federal departments to prevent disease and promote the nation’s health. The report submitted is the Council’s first, and an early step in the Administration’s development of a first-ever National Prevention and Health Promotion strategy. The Strategy’s impact will be significant because it will take a community health approach to prevention and well-being—identifying and prioritizing actions across government and between the public and private sectors. Both the forthcoming Strategy and the ongoing work of the new Council present a historic opportunity to bring prevention and wellness to the forefront of the nation’s efforts to improve the health status of all Americans.

    Read the Council’s report.

    Read the Fact Sheet.


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    Nurse Practitioners Poised to Take the Lead in Primary Health Care

    Pamela Cipriano, PhD, RN, NEA-BC, FAAN

    By Pamela Cipriano. Access to care from Nurse Practitioners got two boosts in recent weeks.  The health insurance reform legislation (Patient Protection and Affordable Care Act, Public Law 111-148) contains important provisions that will address payment and recognition of NP services in medical homes and nurse managed health centers. (Refer to Lisa Korin’s blog 4/16 on “The Patient Centered Medical Home Model:  A Way to CostiEffectively Improve Quality of Care”) Original plans for medical home models had been stalled, and included payment only for physicians; the new law recognizes nurse practitioners as leaders of primary care practices and makes them eligible for reimbursement.  Nurse practitioners are also key providers and leaders of Nurse Managed Health Centers (NMHC).  Reform legislation has made available a new $50 million grant program to help innovative safety net providers.  NMHCs provide a full spectrum of primary care including health promotion and disease prevention to under-served populations, primarily in areas where the supply of primary care physicians is not adequate.

    Another development, which may be below most people’s radar screens is a timely report from the Macy Foundation.  Dr. Linda Cronenwett, Professor and Dean Emeritus of the School of Nursing, University of North Carolina, Chapel Hill, and Dr. Victor J. Dzau, James B. Duke Professor of Medicine, Chancellor of Health Affairs of Duke University, and CEO of Duke Health System were co-chairs of a conference held in January of this year addressing, “Who will provide primary care, and how will they be trained?” While hailing some of the newest developments in team care and use of electronic technologies, the group called for fundamental changes in the education of primary care providers as well as reformed payment structures and incentives that encourage more providers to engage in primary care to meet health needs of individuals and communities. The conference conclusions are rich in actions to address a future workforce, new interprofessional education models, strong innovative leadership, and removal of barriers that hinder nurse practitioners and physician’s assistants from being primary care providers.  A full report of conference proceedings is due out later this year; the co-chair conference summary can be found at:  http://www.josiahmacyfoundation.org/documents/jmf_ChairSumConf_Jan2010.pdf

    A Yahoo! news report last week highlights all these developments, underscoring the debate around NPs providing primary care, but highlighting the patient satisfaction and quality outcomes we know are associated with care by NPs. http://news.yahoo.com/s/ap/20100414/ap_on_he_me/us_med_dr_nurse

    UPDATE:

    On our Facebook Fan Page, Susan Rinkus Farrell shared the following great video about Nurse Practitioners:


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    The Patient Centered Medical Home Model: A Way to Cost-Effectively Improve Quality of Care

    By Lisa Korin. The media has given much attention to the health insurance aspects of health reform, but less to aspects of the law addressing the root issues.  Yes, the number of uninsured is a huge problem, but let’s not forget that an increasingly chronically ill population needing access to often expensive health services is one the key drivers contributing to the plight of the uninsured even needing insurance.

    According to the CDC, nearly 50% of the U.S. population suffers from a preventable chronic health condition, and these diseases account for 75% of the nation’s $2 trillion annual healthcare costs. Much of these costs arise from:  patients obtaining care from multiple healthcare providers, lack of medical care coordination, duplicate diagnostic testing and provider visits, and treatment non-compliance due to consumer confusion.  These facts indicate that increased spending on chronic conditions does not necessarily result in better health outcomes and means that patients with chronic conditions currently receive health care in a manner that may not be the most cost-effective.  These statistics are even more pronounced for minority adults and children as well as for those with low incomes, for whom there are greater disparities in access to care and treatment plan compliance.

    That’s why I was glad to hear that H.R. 3590 Patient Protection and Affordable Care Act had provisions related to the patient centered medical home (PCMH) model of care.   According to the Patient Centered Primary Care Collaborative, PCMH is an approach to providing comprehensive primary care to adults, youth and children that broaden access to primary care while enhancing care coordination. Clinicians practicing in the highest level medical home will: (more…)

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    Beth Sufian Fights for Those Living with Cystic Fibrosis

    Beth Sufian is one of the oldest survivors of Cystic Fibrosis. As an attorney, the Houstonian has fought for the medical rights of thousands of patients — even from her own hospital bed — and travels the country teaching parents how to advocate for their children.
    She took a few minutes to talk with Disruptive Women’s Wendy Grossman.

    Q: You’ve dedicated your career to fighting for people living with CF.
    A: Yes.

    Q: Can you tell me a little bit about your work?
    A: Working with CF is about half of what I do — the other half is serious medical conditions.

    Q: Like what?
    A: I run a hotline for people with CF from all over the country to call and get information about health insurance and benefits and rights and employment. We’ve been in existence since 1998, and we’ve had about14,000 calls.

    We have another project with CF, where we help people with their application for Social Security. We have 100 percent success rate to get benefits for people who can’t work or for their children. We’ve helped 139 people get coverage or government benefits who otherwise wouldn’t have benefits.

    Q: Why did you start that project?
    A: We had a lot of people calling the hotline who needed help. There are no attorneys that help people with their initial applications for benefits. Because you can’t get paid. And, usually, people don’t have the money to pay if they’re stopping work when they’re sick. We did a trial project funded by a drug company grant. We did 25 people and we successfully got all of them benefits. So we got more grant money to open up to people with CF. This past year, Social Security has gotten a million more applications for Social Security Disability benefits. Due to the economy, people with disabilities lose their jobs and can’t get other jobs. They’re trying to work.
    We knew if the application went in with an attorney representing — which is rare — then the application might have a better chance of succeeding.

    And then I represent lots of people with different disabilities. In those same areas insurance benefits, etc. And I do some work to try to make sure new drugs and new therapies coming out are covered with insurance.

    Q: So you and your younger sister were both diagnosed with CF when you were 9?
    A: Yeah. I was 9 and she was 7.

    Q: How old are you now?
    A: I’m 44. That’s old for CF. That’s really old. The average age of death last year was 25. Half the people were younger, and half were older.

    Q: You’re a walking miracle.
    A: Yup, I guess so.

    Q: So what are you doing to stay alive? (Note, I’m ashamed I asked that. I apologized.)
    A: To stay alive? I do a lot of treatments. Now there are medical treatments to better help manage the disease. It’s still difficult. We had a new drug approved last week called Cayston, it’s an inhaled antibiotic. And I’ve been on the study for about three years. And I testified at the FDA hearing. When the company appealed, I testified on December 10th why it was so important for people with CF. It got formally approved last week. Monday was the first day of last week.

    Q: What do you like about that drug?
    A: My lung function went from 50 to 80 percent. Which is unheard of. You can never get back that much lung function. It is much easier to breathe. I have less mucus on my lungs when I’m on it. Also, because I had less lung infection, I was able to gain about 15 pounds. Which I know most women don’t want to do – but with CF it’s hard to gain weight. And when you’re low weight, you get sicker. Right now I’m 118. And I’ve never been more than 105 pounds. Overall, my health is just dramatically better.

    Q: That’s great.
    A: I was really fighting hard. Otherwise, if it wouldn’t have been approved we would have to wait another two years to do another study. That was not acceptable. It was very frustrating we had 18 months from when it was denied to when it was finally approved. We don’t have that many drugs. We have three, FDA-approved drugs total. And it’s such a serious disease. It seemed clear that we needed to have this and not wait another two years. It’s been a good week.

    Q: I read that when you were first diagnosed the doctor told you not tell anyone, because you’d lose your health insurance.
    A:  Correct. He told my parents that.

    Q: Why?
    A: Then there was no HIPPA laws – there wasn’t a law saying they can’t cancel you.  Back then it was, 1975 and they could cancel your policy for whatever reason they wanted. That was true. He was right. Although it was difficult.

    Q: What did you do? How did you get treatment if you didn’t tell people?
    A: There wasn’t any treatment to get. So we were going to the doctor maybe every four months for him to listen to us. But he didn’t have any medicine to give us. There wasn’t any approved drugs for CF then. And life expectancy was 10.

    Q: Tell me about how you started your practice. I read a doctor asked you to help a patient after you graduated law school? And then another, and then another?
    (more…)

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