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Dear Addy: Health Insurance for Young Adults

October 15, 2017

Dear Addy, My son with hemophilia is about to turn 26 and will need to find his own insurance plan. As a parent, how can I help him navigate this process? Signed, Always-an-Advocate  Dear Advocate, This is an important but complicated task. HFA created the following infographic as a tool for walking through the different […]

Dear Addy: Out-of-Pocket Expenses

February 6, 2017

  Dear Addy, I just got my daughter’s January EOB, and I realized that my family is now responsible for up to $14,300 in out-of-pocket (OOP) expenses. Why did this amount go up $600, even though we kept our same insurance? And how can I afford this?!? HELP! Signed, Anxious about OOPs Dear Anxious, High […]

Health Plans’ Coverage Of Some Drugs Can Be A Source Of Consumer Confusion

December 21, 2015

Note: The following story was originally published by Kaiser Health News. By Julie Appleby Patients getting chemotherapy or other complex medications may have a sudden panic when shopping for health insurance: Their drugs often don’t appear to be covered. “People think, ‘Jeez, what do I do now?’” said Anna Howard, policy principal at the American […]

Dear Addy: Out-Of-Pocket Costs

June 15, 2015

Dear Addy, So I saw the question you recently answered about what counts towards a deductible. You didn’t talk about what counts towards out-of-pocket costs. Does every penny I spend on healthcare count towards my out-of-pocket costs limit? Signed,  Pocket Picky  Dear Picky, No, not every penny you spend on healthcare will count towards your annual […]

Dear Addy: Out-Of-Pocket Maximums

January 28, 2015

Dear Addy: I see that my out-of-pocket maximums have gone up this year to $6,600 for an individual and $13,200 for my family. How am I supposed to afford this? With one severe bleed, between hospital stay, medication, and follow-up visits, we could reach this limit within a single month. Sincerely, Sonya, Hemophilia A patient […]

Boston Globe: Help For Patients with Chronic Diseases

July 24, 2014

Receiving a diagnosis for a chronic disease whether for yourself or your child can be devastating and confusing. When my son was diagnosed with hemophilia, he was just days old. I often think back to those first days and distinctly remember a conversation with a nurse, who would go on to become a long-term caregiver […]

Dear Addy: Maximum Out-of-Pocket Expenses

July 21, 2014

Dear Addy, Are there any guarantees that maximum-out-of-pocket expenses won’t continue to rise under the ACA? What, if anything, restricts such a rise? Signed, Not-So-Deep-Pockets __________________________ Dear Pockets, Maximum-out-of-pocket expenses are likely to continue to rise year-after-year. In fact, under the ACA, if the average cost of insurance premiums rises on a per person basis […]

Boston Globe: Specialty Drugs Transform Lives — But At a Cost

July 21, 2014

Every year, Cora Higson fills out a sheaf of forms and waits several long, anxious days to learn whether a charity will pay for the drug she needs to breathe. The medication — Tracleer — is so essential, Higson says, that she is supposed to call her doctor immediately if she misses a dose. But […]

How Our Interns Saw The HFA Hill Day

June 26, 2014

Last week,  members of the bleeding disorder community flew to Washington, DC to speak with their US House and Senate representatives asking them to support HR 460, the Patients’ Access to Treatment Act. This important piece of legislation prohibits insurance companies from charging more for the drugs that they place into specialty tiers, than they […]

Dear Addy: Educating the Emergency Room

June 23, 2014

Dear Addy, We went out of town for vacation and I had to take my son to the ER for a bleed due. Unfortunately, none of the doctors were familiar with hemophilia. I knew more than they did. Instead of comforting my son, I spent my time educating doctors. Is there something I can do […]

HFA ‘Champion Award’ Given to 4 Members of Congress

June 19, 2014

On June 18, 2014, we hosted a successful Hill Day in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 460, The Patients’ Access to Treatment Act in the US Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and funding for the Centers for […]

Infusing Love: Knocking On Capitol Hill’s Doors

June 19, 2014

Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.  Advocacy sounded like downright torture and I didn’t want any part of it. A perspective change came in the late fall of 2005. My husband called […]

Dear Addy: Small Business Health Options Program (SHOP)

May 26, 2014

Dear Addy, I am a small business owner with fewer than 25 employees and I have a child with hemophilia. The private insurance I provide my employees has gotten very expensive. I don’t know if I can afford it any more. Can you let me know what options I have? I don’t want to stop […]

Dear Addy: Informed Consent

April 28, 2014

Dear Addy, The last time I took my son to his HTC I was asked to participate in a survey. I didn’t have time to read the consent form because my son wasn’t feeling well that day, so I asked if I could complete the survey at the next visit. The nurse told me I […]

Dear Addy: Lifetime Caps vs. Annual Caps

April 20, 2014

                Dear Addy, I know “Obamacare” eliminated lifetime caps on January 1, 2014, but are there still annual caps on healthcare costs? Capped-Out __________________________________ Dear Capped-Out, Happily the answer is no, as of January 1, 2014. Actually, it was on September 23, 2010, that the Affordable Care Act […]

FDA: Hemophilia Treatments Have Come a Long Way

April 18, 2014

Gone are the days when a hemophilia diagnosis meant you could not live a normal life. Now more hemophilia treatments are approved by the Food and Drug Administration (FDA), and people with the condition can better manage bleeding. That’s good news as thousands observe World Hemophilia Day on April 17, 2014. Hemophilia is a rare bleeding […]

HIV-Infected Men and Heart Disease

April 4, 2014

Many individuals with hemophilia are living longer, healthier lives due in large part to advances in treatment, access to treatment and knowledge of self care strategies.  Because they are living longer, it is so important for people with hemophilia and other bleeding disorders to make healthy lifestyle choices especially related to diet and exercise.  A nutritious diet and some form of  […]

Dear Addy: Employee Disclosure

March 3, 2014

  Dear Addy, Should I tell my work I have hemophilia? I am worried the company might hold my hemophilia against me. I do not want the people at my work to think I can’t do my job or that I will be using too many sick days. Chronically Fearful ____________________________ Dear Fearful, Your concerns […]

Right Here, Right Now

February 26, 2014

ad·vo·ca·cy noun \ˈad-və-kə-sē : the act or process of supporting a cause or proposal : the act or process of advocating something The bleeding disorder community has been going to Washington for decades. When we started losing members from the tainted blood products some justifiably angry affected men, women and families decided it was time […]

The Truth About Advocacy

February 27, 2013

              Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.  Advocacy sounded like downright torture and I didn’t want any part of it. A perspective change came in the […]

Largest health insurer to keep key parts of law regardless of court ruling

June 11, 2012

Largest health insurer to keep key parts of law regardless of court ruling from the Washington Post: http://www.washingtonpost.com/national/health-science/largest-health-insurer-to-keep-key-parts-of-law-regardless-of-court-ruling/2012/06/10/gJQA7VYfTV_story.html?tid=pm_pop By N.C. Aizenman, Monday, June 11, 12:11 AM The nation’s largest health insurer will keep in place several key consumer provisions mandated by the 2010 health-care law regardless of whether the statute survives Supreme Court review. Officials at UnitedHealthcare will announce Monday that whatever […]

HHS Considering Study on Blood Donation Standards for Gay and Bisexual Men

March 16, 2012

By Jane Norman, CQ HealthBeat Associate Editor The Department of Health and Human Services wants input on how to design a study that would detail under what circumstances men who have a history of sex with other men should be allowed to donate blood. Under current Food and Drug Administration policy, men who have had […]

U.S. Department of Health and Human Services releases Essential Health Benefits Bulletin

January 6, 2012

On Monday, Dec. 16, the U.S. Department of Health and Human Services (HHS) released a bulletin outlining guidance to states on implementing Essential Health Benefits (EHBs).  As you may recall, the Affordable Care Act will require individuals to have insurance coverage by 2014.  Individuals and business may purchase health insurance in a state based “health […]

Chinese Firms Linked to Tainted Heparin Still Supplying U.S.

October 28, 2011

By Anna Edney Courtesy of Bloomberg News Oct. 26 (Bloomberg) — Two Chinese companies implicated in supplying contaminated ingredients three years ago to Baxter International Inc. for its blood thinner heparin are still supplying product to the U.S., Republican lawmakers said. Baxter recalled the blood thinner in 2008 amid reports of deaths and allergic reactions. […]

Advisory Panel Releases ‘Essential Benefits’ Report

October 7, 2011

The Institute of Medicine (IOM) released its report of recommendations to the United States Department of Health and Human Services regarding what health benefits should  be provided by insurance plans under the Health reform law – the Affordable Care Act (ACA).   The ACA requires states to set up an health insurance market place or exchange by […]

Understanding the Debt Ceiling and the “Super Committee”

September 9, 2011

In early August the President signed into law the Budget Control Act of 2011, which is reported to save approximately $917 billion over the next ten years and will raise the debt ceiling by $900 billion, therefore carrying the government through the end of 2011. The bill also establishes a new joint Congressional committee that […]

Drug Companies May Face Uphill Battle on Passage of FDA Review Funding

September 5, 2011

CQ TODAY ONLINE NEWS – HEALTH Sept. 2, 2011 – 8:17 p.m. By Emily Ethridge, CQ Staff The pharmaceutical industry continues to push lawmakers to act quickly on approving a deal that would fund the Food and Drug Administration’s drug review process. But, although lawmakers from both parties have pledged to mark up the legislation […]

Medical mystery: UMass doctors race to counter rare blood disorder

September 2, 2011

By Geraldine A. Collier Courtesy of Worchester Telegram & Gazette Doctors are taught in medical training to “look first for the horses, not the zebras.”  In other words, look first for the typical causes of symptoms before exploring more exotic possibilities. But, former Worcester School Superintendent John Durkin wouldn’t be alive today if his doctors at […]

America’s Innovation Agency: The FDA

September 2, 2011

By instilling confidence in U.S. products and technologies, we stimulate economic growth and open markets overseas. By MARGARET A. HAMBURG Courtesy of the Wall Street Journal There are encouraging signs that the pharmaceutical industry’s pipeline of new products is not as stalled as some say.  Already in 2011, the Food and Drug Administration (FDA) has approved […]

Health Insurance Exchange Regulation Due Out July 7

June 29, 2011

CQ HEALTHBEAT NEWS By John Reichard, CQ HealthBeat Editor   The Obama administration plans to release its proposed regulation on state health insurance exchanges July 7. The rules governing the establishment of the exchanges, which under the health care overhaul law begin operating in 2014, are much anticipated by state lawmakers, insurers, employers and consumers. […]


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