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Health Care Coverage

Dear Addy: In-Network

November 11, 2014

[glossary_exclude]   Dear Addy, I have heard from a friend that their hemophilia treatment center (HTC) is no longer 鈥渋n-network鈥 for their insurance plan but instead is 鈥渙ut-of-network.鈥 What does this mean and should I be worried about my insurance plan changing? 聽Signed, 聽Nervous Over Network _______________________ Dear Nervous, The term 鈥渙ut-of-network鈥 refers to those […]

Are you Ready for Open Enrollment?

November 5, 2014

[glossary_exclude]Summer is over and already it is time to start making your list and checking it twice. No, not that list; the list of the things you need to make sure your health insurance plan covers when your open enrollment period starts. An open enrollment period is the time when individuals can enroll themselves and […]

Dear Addy: Choice in Health Care

September 30, 2014

Dear Addy, I am frustrated because my insurance company has mandated that its members use a single pharmacy provider. What can be done to stop this denial of choice? Signed, Pharmacy Frustrated< ________________________________________________ Dear Frustrated, Health insurance providers are making this change as a cost savings measure. In order to keep their costs down, and […]

Dear Addy: Open Enrollment Period

September 27, 2014

  Note: This article was updated on 11/10/2015 to reflect Open Enrollment dates for plans beginning in 2016.聽   Dear Addy, I am not happy with my current health insurance. My work told me that I can鈥檛 change my plan until the聽鈥淥pen Enrollment Period鈥 starts. What is an open enrollment period and why do I […]

An Inhibitor Mom Shares Her Story With the FDA

September 25, 2014

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out […]

Leveling with the FDA About Hemophilia Inhibitors

September 23, 2014

On Monday, September 22, several members of the bleeding disorders community came out to聽share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out to […]

HFA’s Excutive Director to FDA: Treatment is Not One Size Fits All

September 23, 2014

On Monday, September 22,聽several members of the bleeding disorders community came out to聽share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out to share […]

Adult Male Disccuses Pain Management and Treatment with FDA

September 23, 2014

On Monday, September 22,聽several members of the bleeding disorders community came out to聽share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out to share […]

Blood Brother Shares Hemophilia Treatment Experiences With FDA

September 23, 2014

On Monday, September 22, 聽members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out […]

Dear Addy: Max Out-of-Pocket

September 1, 2014

Note: This article was updated on 11/10/2015 to reflect 2016 out of pocket maximum limits.   Dear Addy, I鈥檓 a confused individual with private health insurance. I read that under the Affordable Care Act (ACA) the maximum annual out-of-pocket cost for health care is $6,850.00 for an individual. My insurance company is moving my factor […]

Dear Addy: Self-Insured Plans

August 4, 2014

Dear Addy, I heard something about individual health insurance plans. What can these plans do? Are there lifetime caps? Are out-of-pocket maximums higher or lower? I am just wondering if I should add this kind of plan to my list as a potential option. Signed, Shopping for the Best Deal ________________________ Dear Best Deal, After […]

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鈥檛 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 […]

Dear Addy: Veteran鈥檚 Health Care

July 7, 2014

Dear Addy, Will the ACA [Affordable Care Act] affect military insurance for active duty and retirees? Signed, A Curious Veteran ___________________________ Dear Veteran, The ACA will not affect active duty military or veterans who are enrolled in either TRICARE or the Veteran鈥檚 health care program. If you are not enrolled in TRICARE or the Veteran鈥檚 […]

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聽alongside an online Virtual Hill Day聽to gain support for bill HR 460, The Patients鈥 Access to Treatment Act聽in the US Senate, and other issues like聽the ability for third-party non-profits to help make payments on behalf of patients, and funding for the Centers for […]

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鈥檛 know if I can afford it any more. Can you let me know what options I have? I don鈥檛 want to stop […]

Stop CMS from Blocking Patients from Accessing Health Insurance

May 12, 2014

The Issue: CMS has released an interim final rule, Patient Protection and Affordable Care Act; Third Party Payment of Qualified Health Plan Premiums (CMS鈥9943–IFC). This proposed rule defines criteria for health insurance providers in the federal marketplace to accept third party premium assistance from specific entities: 鈥 Ryan White HIV/AIDS program; 鈥 Specific Federal and […]

Dear Addy: Lifetime Caps vs. Annual Caps

April 20, 2014

                Dear Addy, I know 鈥淥bamacare鈥 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 […]

Dear Addy: Individual Mandate

January 27, 2014

Dear Addy, My daughter with von Willebrand disease has health insurance but I don鈥檛 have health insurance for myself. What will happen if I decide not to purchase any? Coverage Unsure ____________________________ Dear Unsure, The deadline to purchase insurance without facing a penalty is March 31, 2014. Because of the individual mandate under the Affordable […]

Dear Addy: Washington Days

January 13, 2014

                Dear Addy, I am going to NHF鈥檚 Washington Days and I have an opportunity to speak with my Congress person about hemophilia issues. I am worried I don鈥檛 know enough and that my Congress person will not take me seriously. How do I prepare for this meeting? […]

Dear Addy: Pre-Existing Condition Insurance Plan

December 9, 2013

Dear Addy, I have a young child with substantial medical costs. For the past couple of years I have spent 20-40% of my income on medical bills. Unfortunately my income is “too high” for Medicaid. I live in Texas and I currently have PCIP (pre-existing condition insurance plan) insurance which ends this month. What do […]

Dear Addy: Open Enrollment

November 26, 2013

Dear Addy, It is open health insurance enrollment time for my company. Do I still have to worry about qualifying for coverage because I have a pre-existing condition? Open Enrollment Jitters in Minnesota ___________________________ Dear Jitters, The cold in Minnesota should make you shake more than the issue of pre-existing conditions in 2014. Starting in […]

Are You Prepared for the Healthcare Insurance Marketplace?

November 11, 2013

The countdown to the launch of the new online Health Insurance Marketplace is on. Are you ready? If you, like many Americans, have questions about what the Marketplace is and what it does, there are excellent resources available to help answer these questions. Here are some of the most frequently asked questions: 鈥淭he Marketplace鈥 The […]

Dear Addy: Individual Mandate

September 16, 2013

Dear Addy, I just turned 27 and have lots of debt. Instead of purchasing health insurance, I would rather use the money I make to pay down what I owe. I have mild hemophilia and I have not had a bleed in a year. Do I still need to have health insurance under the new […]

Physician Payment Sunshine Act Sheds Light on Payments Made to Doctors

September 16, 2013

A little-discussed provision of the Affordable Care Act is making physicians, hospitals and manufacturers in the health care industry reconsider how they do business.聽 The Physician Payment Sunshine Act requires certain drug, medical device and biological manufacturers to disclose to the聽Centers for Medicare & Medicaid Services (CMS)聽any payments or other transfers of value to physicians […]

Essential Health Benefits: What are they and who decides?

August 26, 2013

As we have discussed in previous posts, beginning in 2014, under the Affordable Care Act (ACA), Medicaid plans and small group and individual plans sold inside and outside of the Health Insurance Marketplace must cover a package of 10 categories of items and services known as Essential Health Benefits (EHBs).聽 These categories include: Ambulatory patient […]

Health Insurance Options in 2014

August 20, 2013

In a recent post, we discussed the insurance mandate itself.聽 That is, the requirement that most people have health insurance beginning in 2014 or face a financial penalty.聽 We also briefly mentioned the insurance options that will be available to you in order to fulfill this requirement.聽 They are鈥 Have employer-sponsored insurance Be covered by […]

Out of Pocket Maximums and the 2014 Transition Year

August 14, 2013

Beginning in 2014, the Affordable Care Act (ACA) will set maximum limits on how much consumers can be required to pay out-of-pocket annually for their health care.聽 Under the law, the maximum amount a consumer with single coverage will pay out-of-pocket will generally be $6,350, while a family could pay up to $12,700. In 2015, […]

Medicaid Expansion in Your State

April 18, 2013

聽 The Medicaid program is a federal and state partnership to provide health insurance for those who are financially and medically needy. It is a vital safety net in our health care system. Federal law sets a baseline of eligibility categories for states to follow, but states have the flexibility to cover above that baseline […]

The Wilkes Family, “Thanks ObamaCare”

April 9, 2012

My son Thomas was born in 2003. After his circumcision, he continued to bleed. Within a day, my husband Nathan and I were told that our newborn son had severe hemophilia, a genetic blood clotting disorder. A local hematologist was at our bedside within 30 minutes of us getting the call. She was there to […]


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