Traveling This Holiday Season?

Here’s our quick travel checklist to help you finalize your preparations. Bon Voyage!

Action Alert: Apria Healthcare PHA has heard from several individuals who are experiencing problems with Apria Healthcare. In particular, Apria is now charging $300-$400 to deliver oxygen to a travel destination. We would like to know how this is affecting the PH community. If you have experienced this, please contact Nikki at Insurance@PHAssociation.org or 301-565-3004 x774. You may also wish to rate Apria on Consumer Affairs.

  Check with your doctor before you finalize your trip.

• Remember to discuss things such as the climate and altitude levels of your travel destination.
• Ask your doctor who they would recommend you contact if you encounter an emergency during your trip.
• Even if you are not flying, obtain a letter from your doctor that outlines your condition and medications.

  Take your medications with you.

• Seems obvious, but don’t forget your medication. If you have access to extra supplies, bring them with you.
• If you are flying, pack your medications in your carry-on.
• Keep your medications in their original prescription containers.

  Request a scooter.

• Consider requesting a scooter or wheelchair from your airline to save you energy, time and maybe even give you priority boarding.

  Know and follow all guidelines and regulations when traveling with oxygen.

• Notify the train, bus company or airline well in advance that you will be traveling with oxygen.
• Bring extra batteries and/or extra oxygen tubing with you on your trip.

  Be safe and have fun!

• Visit our traveling with PH page for more tips.
• Take pictures and share your travel memories on myPHA!

Medicare Open Enrollment - What You Need to Know

Medicare Open Enrollment only comes once a year, and it's right around the corner. Here are five things you need to know to get the most out of this open enrollment season, which runs from Oct. 15 to Dec. 7, 2015.

1. What is Medicare Open Enrollment?
   Oct. 15 through Dec. 7, 2015 is the only time during which you can make changes to your Medicare Advantage (Part C) and prescription drug (Part D) plans. This means that if you don’t like your current plan, you can use this time to switch to another plan. Or, if you don’t currently have a plan, you can use this time to add one to your Medicare health coverage.
2. What are the different parts of Medicare?
   Medicare is broken down into four main parts – Parts A, B, C and D.
   • Part A covers inpatient services like inpatient hospital care, skilled nursing facilities, hospice and other healthcare services.
   • Part B covers outpatient services such as doctors' visits, outpatient hospital care, durable medical equipment (DME), preventative care and prescription drugs that require medical equipment to administer.
   • Part C allows members to select a privately managed care plan to replace original Medicare and its benefits. Known as Medicare Advantage Plans, these plans provide all Part A & B services, but may do so with different rules, costs and restrictions.
   • Part D is an optional outpatient prescription drug coverage that is provided through private insurance companies.
   
   Again, only Parts C and D can be changed during Medicare Open Enrollment. For more information on each part, please see PHA's chart of Medicare benefits.
3. What should I know before changing my Part C plan?Medicare Advantage Plans must cover all of the services that Original Medicare covers, such as hospital care, medically necessary services, skilled nursing care, preventive services and durable medical equipment (DME). In addition, they may offer extra coverage like vision, hearing and dental.
   
   Before you enroll in a new Medicare Advantage Plan, be sure to verify any and all information you receive. For example, if a representative says that a particular medical provider is in network, you should call the practice to confirm with the physician.
4. How do I choose a Part D plan?
   Start by visiting PHA’s Part D Guide to help you outline the process.
   
   If your Medicare Advantage Plan is an HMO or PPO, you should generally get drug coverage from that same company. If your Medicare Advantage Plan is a Medicare Savings Account (MSA), Private Fee-for-Service (PFFS) or Cost Plan, you can join a stand alone drug plan (PDP).
   
   Using Medicare's plan comparison tool, investigate your prescription drug coverage and out-of-pocket costs. You will want to ensure that your plan covers all the medications you take and includes the pharmacies you prefer.
   
5. Additional ResourcesWatch Get Prepared for Medicare Open Enrollment, a PHA Classroom recording by Lauren Ruiz, Senior Case Manager at Caring Voice Coalition, for more information on Medicare Open Enrollment
   
   Contact the Caring Voice Coalition (CVC) at www.CaringVoice.org or 1-888-267-1440 with questions. CVC's insurance specialists can help you navigate your current insurance coverage and help you identify and explore sources of new or improved coverage.

Your Voice: Changing Specialty Pharmacy Practice

At the end of 2013, PHA launched the Specialty Pharmacy Feedback Form in partnership with the Caring Voice Coalition (CVC) as a way for PH patients, caregivers and healthcare professionals to share their experiences with specialty pharmacies. Since then, we have gathered nearly 2,000 responses from community members all over the country - from over 900 different cities and 47 states!

You've told specialty pharmacies what works well and what needs improvement… and they’ve listened. When the program first started, many PHers voiced their frustrations with the long phone calls they had with pharmacy representatives. “The calls take so long that I’m out of breath before it’s even over,” said one respondent. To address this issue, PHA impressed the need for shorter phone calls during a quarterly Advisory Board meeting with the specialty pharmacies. Now, we’re seeing results.

In the beginning, over half of all PHers who submitted feedback were reporting long call times with their specialty pharmacies (identified as calls longer than five minutes). That number has since dropped from 52 percent to less than 32 percent – the lowest it’s ever been!

Moving forward, PHA continues to collaborate with industry to improve specialty pharmacy service and ensure quality access to treatment. We can't do it without you. Please share your own praise, concerns and suggestions through this form to help us identify the issues that need to be addressed. Your input can help the entire PH community.

Medicare and Medicaid Celebrate Impact, Look Toward Future on 50th Anniversary

July 30, 2015, marked 50 years since President Lyndon B. Johnson signed an amendment to the Social Security Act that made Medicare and Medicaid law. Since then, the number of uninsured Americans 65 and older has dropped from 48 percent to just 2 percent. Medicare now covers approximately 55 million Americans: the single largest provider of health insurance coverage in the country.

Medicaid, too, continues to expand as individual states opt into the federal Medicaid funds offered by the Affordable Care Act. Thirty-one states have expanded their Medicaid programs since 2010, providing healthcare coverage to adults under the age of 65 whose incomes are equal to or less than 138 percent of the federal poverty level

While much has changed in the landscape of American healthcare in the last five years, there is still room for improvement. According to a recent Kaiser Family Foundation poll on Medicare and Medicaid, nearly 40 percent of those with Medicaid and 20 percent of those with Medicare experience problems with coverage or finding providers. Furthermore, a number of Medicare and Medicaid enrollees report financial hardships as a result of their healthcare costs, forcing them to spend less on food, heat and other basic needs.

In addition, Medicare itself now faces financial challenges, and is reforming its payment structure. One of the ways Medicare will do so is by transitioning away from its fee-for-service payment model and moving toward alternate quality-based payment models. Additionally, the Center for Medicare & Medicaid Services (CMS) is pushing providers to better coordinate care – requiring physicians, hospitals and other healthcare providers to work together – and determining compensation based on improved patient outcomes.

With this in mind, PHA is committed to monitoring individual experiences and working with CMS to provide quality access to care for all PHers. If you are experiencing difficulties in attaining health coverage or are having problems with your Medicare or Medicaid, please contact Tim at Insurance@PHAssociation.org or 301-565-3004 x773.

What's Happening with PH Treatment Access?

From historic legislation to important PHA presentations, May and June have been busy months for treatment access issues in the PH community. Learn more about what’s happened these past few weeks:

• Maintaining Health Coverage for Marketplace Users
  On June 25, 2015, the Supreme Court of the United States upheld a key component of the Affordable Care Act, ensuring that premium tax credits remain available in all 50 states and the District of Columbia. This 6-to-3 decision reaffirms the Affordable Care Act as the law of the land. This is great news for individuals living with rare diseases, many of whom rely on the Marketplaces for their health insurance. Read more
   
• California Leading the Way in Treatment Access
  Over the years, expensive specialty medications used to treat chronic illnesses, like pulmonary hypertension, have forced some patients to choose between their health and their living expenses. With medications costing upwards of $200,000 a year and insurance plans requiring out-of-pocket payments of 25 to 50 percent or more, PH patients face a serious dilemma.
  
  To address this issue of treatment access, Covered California, California’s health insurance marketplace, established rules that will cap the amount people enrolled in one of their health insurance plans can be charged each month for specialty medications, the first exchange to do so. Overall, the caps will range from $150 to $500 a month. These changes, which take effect in 2016, will ensure that Covered California consumers can afford the PH medications they need.
   
• Educating State Legislators on PH
  Last month, PHA presented to women state legislators at both the Western and Midwestern Regional Conferences of Women In Government (WIG). At the Annual Midwestern Regional Conference, PH patient and PHA Board of Trustees member, Colleen Brunetti, shared her story and highlighted the many medication delivery issues PH patients face. Katie Kroner, PHA Senior Director of Advocacy & Awareness, and Sandee Lombardi, RN, spoke at the Annual Western Regional Conference to highlight barriers such as treatment access issues, diagnosis delays, coverage concerns and more.

Step by step, PHA is continuing its goal of increasing awareness and advocating for PHers everywhere. For questions, contact Tim at Insurance@PHAssociation.org.

Specialty Pharmacy Feedback Form

PHA has partnered with the Caring Voice Coalition (CVC) to collect feedback and improve specialty pharmacy services.

Join the 1,900 other patients, caregivers and medical professionals who have voiced their praise, concerns and suggestions by submitting your feedback today.

Disability FAQs

Get the Assistance You Need!

Get Started! Register for the free upcoming disability webinar – “Applying for Disability: The When, Why and How” Wednesday, June 17, 2015 at 3:00 p.m. ET/12:00 p.m. PT. Visit the Social Security Disability section of PHA’s Online Insurance Guide.

Applying for disability can seem like an intimidating process. Many people believe that the Social Security Administration (SSA) will turn you down a few times before you get approved, but this is not true. Thirty percent of applicants get approved on their initial application, and the more you understand about the process, the better your chances are of being in this 30 percent.

What is Social Security Disability?
Social Security Disability (SSD) is essentially an insurance plan that helps to cover medical expenses when you are unable to work. The benefits paid to SSD recipients come from money acquired via Social Security payroll taxes (FICA).

Is Social Security Disability (SSD) the same thing as Supplemental Security Income (SSI)?
No. SSD is an earned benefit that pays you and certain members of your family if you are “insured,” meaning that you have worked long enough and paid Social Security taxes. Generally, you need 40 work credits, 20 of which were earned in the last 10 years, ending with the year you became disabled. Young workers, however, may qualify with fewer credits.

SSI, on the other hand, is a cash benefit for people with low income and who are disabled, blind or over 65 years old. Additionally, SSI is financed by general taxes collected by the federal government and is available to anyone regardless of work history.

Do I qualify for disability benefits?
In order to qualify for SSD benefits, you must meet both an earning and disability requirement:

• Earning requirement: Because SSD pulls from money acquired via payroll taxes, to receive benefits you must have worked jobs where you paid into Social Security payroll taxes (FICA) over a period of time.
• Disability requirement: You must also have a medical condition that meets the SSA's definition of disability. Social Security pays only for total disability, defined by your inability to work. The SSA considers you disabled if you cannot do work that you did before and cannot adjust to other work because of your medical condition(s). Additionally, your disability must last, or be expected to last, for at least one year, or to result in death.

How do I apply?
You should apply for disability benefits as soon as you become disabled. It can take a long time to process an application for benefits (three to five months depending on your state). Contact Caring Voice Coalition (CVC) – www.CaringVoice.org or 1-888-267-1440 – to request free disability assistance. CVC’s patient advocates can assist you with everything from gathering the necessary documents to representing you in court.

Medicare Updates for PHers

Goodbye SGR, Hello New Medicare Cards

On April 16, 2015, the Medicare Access and CHIP Reauthorization Act (H.R. 2) was signed into effect by President Barack Obama after a bipartisan effort in both the House and Senate. Here are some notable results:

1. SGR Repeal
   The Medicare Sustainable Growth Rate, or SGR, is an outdated payment formula that has been in place since the '90s. Historically, it has reduced payments to Medicare physicians and threatened patients' access to treatment. H.R. 2 will replace this flawed formula with modest annual increases to Medicare funding.
    
2. Upgraded Medicare Cards
   Medicare will finally upgrade its Medicare cards to remove beneficiaries’ Social Security numbers from their cards. Many, including the Social Security Administration, have long protested this practice, noting the potential for identify theft. In this bill, Congress allocates $320 million over four years to fund the transition.
    
3. Higher Quality Care
   The bill includes a provision that incentivizes a transition from volume-based payments to value-based payments. This will encourage physicians to provide PH patients on Medicare with more consistent quality care at reasonable costs.

PHA has long lobbied for Medicare reform to address these needs and ensure treatment access for PH patients. Moving forward, PHA hopes to target the high out-of-pocket costs of specialty PH medications with the Patients' Access to Treatments Act (H.R. 1600).

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Advocacy Success - National PH Call-In Day

April 16, 2015, was also PHA’s National Call-In Day, a day-long event where PH community members called their Members of Congress and asked them to co-sponsor the Patients’ Access to Treatments Act. Constituents from 17 reported states made the calls and, within a week, eight legislators co-sponsored the bill, bringing the total to 66 co-sponsors.

To help PHA move this legislation through Congress and reduce the excessive out-of-pocket costs of PH medications, please visit PHA's Advocacy Action Center.