Advocacy from your Couch


Iowa Can do better on medicaid

The 20 Democrats and one Independent in the Iowa Senate have introduced a bill (SF 2058) to end privatized Medicaid. We want to put Iowans back in control of a state-run system that provides affordable health care to 600,000 citizens.

Since April 2016, when Medicaid was turned over to out-of-state companies, Iowans have complained about the obstacles they face getting care and services.

Hospitals, nursing homes and other health care providers – especially in Iowa’s small towns and rural areas – agree that the privatized system is not working. They aren’t being properly reimbursed for the care they provide. They face red tape and bureaucratic nightmares. Many are in financial jeopardy, and some have even been forced to close their doors.

Things continue to get worse. Yet the state keeps giving private, out-of-state companies more of your tax dollars to run Medicaid. In fact, Governor Reynolds just agreed to give them another $130 million.

This is not how health care should work for Iowans who are gravely ill or live with a disability. Even the Reynolds Administration now admits privatized Medicaid has many shortcomings, but refuses to return to a system that once worked so well for Iowa.

Our families are all just one tragic mishap away from being entangled in Iowa’s Medicaid mess. That’s what happened to Michelle Meadors when an auto accident on her way home from work left her paralyzed. She is now one of many Iowans fighting for decent health care for all of us. During a recent visit to the Statehouse, she shared her story with Senator Kevin Kinney of Oxford and Senator Rich Taylor of Mount Pleasant. Here’s a video of her testimony at a legislative meeting in 2016: Many of the concerns Michelle raised then are still problems today.

Ensure our most vulnerable get the care they need

To help Iowans with especially complex health care needs, Senators Amanda Ragan and Liz Mathis have co-sponsored a second Medicaid bill.

SF 2013 would return Medicaid patients with complex health care needs to the state-run system that worked well for them prior to Medicaid privatization. These folks could be your next door neighbor who is a quadriplegic, a student in a special classroom for severe developmental disabilities, or a senior with a serious illness that cannot be addressed through typical health care.

In 2016, all Medicaid patients were thrown into the new system with only a few months to plan. Not a wise move. Iowans have died because of cuts to servicesunder managed care. 

Many other states have “layered-in” citizens with more complex needs over time. With SF2013, Iowa could work to get managed care right for the larger population.  

Let’s listen to Iowans

Between SF2013 and SF2058, we are answering the concerns of 600,000 Medicaid patients, as well as thousands of Iowa health care providers, advocates and families. 

We can and should redesign Medicaid our own way—the Iowa way. We have many experts across the state with innovative ideas for delivering great service AND saving money.

Governor Reynolds could end the chaos created by the Administration’s unilateral decision to privatize Medicaid by working with us on these solutions.

Senate Democratic Leader Janet Petersen meets with parents advocating for their adult children with disabilities. They rely on Medicaid assistance for many aspects of their daily living. The privatized Medicaid system has failed them. They, like thousands of other Iowans, believe our citizens would be better served under an Iowa-run system that doesn’t give out-of-state companies the chance to earn a profit by cutting care and providers’ payments.

Why Iowa needs to pass Copay Choice in Legislation

  • The average deductible for employer based plans in Iowa increased 188% for individuals and 185% for families since 2004.

  • Payments for cost-sharing have risen exponentially across the U.S. since 2004 and have rapidly outpaced wages.

  • Use of drug (Rx) deductibles across the U.S. increased 100% between 2012 and 2015 (23% to 46%) in commercial health plans.

  • The average annual deductible for health exchange individual policies in 2017 across the country was $4,328.

  • Nationally, 1 in 5 prescriptions is abandoned while a patient is still paying a deductible. Non-adherence to medication regimens adds an additional $100 billion in costs to the US healthcare system. Indirect costs exceed $1.5 billion annually in lost patient earnings and $50 billion in lost productivity.

Co-Insurance vs. Co-Pay: What’s The Difference?

Rather than paying a fixed and predictable co-pay, insurers are requiring more enrollees to pay a percentage of their medicine’s list price -- this is co-insurance. Co-insurance tends to shift cost to the sickest patients, and it prevents patients from knowing how much their medicines will cost until they arrive at the pharmacy.

Did you know?

Co-insurance is unaffordable for most Americans, as the monthly cost of cutting edge biologic drugs necessary to treat many serious and chronic illnesses can be in the tens of thousands of dollars.

Nationally, use of co-pays for drugs dropped nearly 60 percent between 2004 and 2014 among commercial insurance plans.

Although most people taking prescription medication say they can afford their treatment, about 1 in 4 have a difficult time affording it.


What will the Co-Pay Choice Legislation do?

  • 25% of individual or group plans within state regulated insurance carriers, will offer pre-deductible, flat dollar co-payment structure.

  • If a carrier only provides one plan in a given insurance level, that plan shall comply with the requirements of the 25% individual and group plans.

  • Flat-dollar co-payment includes all specialty tier medication.

  • Co-payment must be reasonably graduated and proportionate to drug formulary tier levels.

  • High deductible or catastrophic plans are exempt from these requirements.

What does the bill do?

  • Expands insurance options.

  • Gives patients insurance options without high-upfront prescription costs.

  • Gives patients insurance options with predictable co-pays.

  • Mirrors successful policies from other states (CO, MT).

What doesn’t the bill do?

  • Create a mandate.

  • Require insurers to raise premiums.

  • Prevent insurers from using deductible or co-insurance.

  • Require caps or limits.

  • Prevent insurers from offering HDHPs.


pwsadmin / January 23, 2018

SL: Join [PATIENT ORGANIZATION] in Des Moines on February 6!
Hello [PATIENT org] Community Member,
[Patient organization] is a member of the Iowa Co-Pay Choice Coalition which brings together a variety of patient and provider organizations with the common goal of introducing a bill this legislative session in Iowa that will ensure that people with chronic conditions in need of expensive treatments have a choice of health insurance plans that offer an option for flat fee only co-pays with no deductibles for medications on all tier levels. This will address the challenges families have with high co-pays and will allow them to plan for their annual healthcare expenses.
In support of this effort, the coalition will be holding an advocacy day in Des Moines on Tuesday, February 6, where people with many different chronic conditions, representing a number of patient communities, including [Named patient community], will advocate for this vital piece of legislation in their state capital.
I would like to invite you to join {Patient Organization] in Des Moines for the Iowa Co-pay Choice Coalition Advocacy Day on February 6, 2018.
An agenda for the event is currently being finalized, however, we anticipate the day beginning at approximately 8:00am and going until after lunchtime.
To register to participate in the Iowa Co-pay Choice Coalition Advocacy Day, please click here.
If you have any questions, please contact _________ of [Patient Organization.] The advocacy day is being led by the Immune Deficiency Foundation (IDF) and specific questions may be emailed to Jamie Sexton, IDF Government Relations Specialist.

What the Government Shutdown has to do with the BD Community


Though Medicare or Medicaid will continue to operate, the biggest concern is how the shutdown might affect the Children’s Health Insurance Program (CHIP), which provides low-cost health coverage to children in families that earn too much money to qualify for Medicaid.

Funding for the program ran out in October, and though Congress provided $2.85 billion in December, that money is running out, says Don Taylor, a professor at Duke University’s Sanford School of Public Policy. The government shutdown now makes it unlikely that states would be able to get their share of any funding, according to the Centers for Medicare & Medicaid Services.

There are currently two live bills that relate to non-medical switching at the Iowa Legislature

These bills are about non-medical switching which will discuss "coverage exemption determination" and other topics that will affect the community. 

Hemophilia of Iowa Advocacy from Your Couch Member Spotlight!

Mark Castenson and family attended Hemophilia of Iowa's Legislative Day in 2017. They had the chance to meet with State Representative Art Staed.

"The Castensons spoke to me about HF233/SSB 1072. This is a bill aimed at revising “fail first” protocols among Iowa’s health plans. “Fail first” protocols control the order and use of prescription drugs that a patient may use. Often, patients must try, and then fail on lower-cost or older drugs selected by their health plan before coverage is granted for the drug prescribed by the patient’s health care provider."

"HOI would like to ensure that appropriate medicine - not just cost - dictates patient treatment. This will not prevent insurers from requiring generic version equivalents when they are available, but it will require that the “fail first” exceptions process be transparent and accessible to patients and health care providers."

Thank you to the Castenson's for bringing this to the states attention!

How to maintain protection for current plans

Stay up to date and make action! 

How to contact your representatives 

Use these sample letters for you to reach out to your representative! 

BUTTON – Click here to find representative -


A letter to your elected representative is a powerful tool. It helps policymakers understand the human impact of the laws they create.

A good letter tells a story of how a particular piece of legislation affects you. It includes personal anecdotes as well as facts about the law. It shows that you understand the issue, and want, in turn, to make your lawmaker understand how deeply this would affect you.

When writing a letter, a few things to keep in mind:

Be clear and concise. Try to keep the letter to one page.
Use personal information (you bleeding disorder; you medical costs, etc.)
Include photos
Convey urgency, not anger
Below is a sample letter which you can use as a template to write to your Senator, governor, other elected official, or local newspaper. This letter highlights the issues in the bill that would have the biggest effect on the bleeding disorders community.

Below is a sample letter!

Letter to Senator Collins



pwsadmin / January 17, 2018

The Honorable (full name)
U.S. House of Representatives
Washington, D.C. 20515

Dear Representative (last name):

The legislation addressing SSB 3003 Continuity of Care-Non-Medical Switching is of paramount interest to me because I am a caregiver of someone with a bleeding disorder. This issue directly my family and community because we are not receiving access to the correct treatment or care causing sever complications.

I am primarily concerned about patient access to product and care in Iowa because with the limited number of insurance providers we are being tossed to the side. Other aspects of this same issue that affect my child are medical switching, my child is not receiving the correct treatment for their bleeding disorder.

Although I have read reports of your position in the newspapers, I realize this may not fully represent your viewpoint. Therefore, I will look forward to your reply expressing your opinions, and your current stance on the issue.

Thank you for your consideration of my viewpoint on this matter. I believe it is an important issue, and would like to see the legislation amend to ensure effective educational services for the students involved.


Your name,
Phone Number
Email Address


What's happening

Medicaid links to 

Medicaid is currently one of the few providers available for individuals with bleeding disorders. Medicaid is a medical assistance program administered by the state and funded through a state-federal partnership.


pwsadmin / January 15, 2018


Medicaid is a medical assistance program administered by the state and funded through a state-federal partnership.  It provides health care to almost 60 million uninsured, low-income individuals and reimburses providers – safety net institutions and other health care providers – at set rates for services provided to Medicaid recipients and hospitals with a disproportionate share of uninsured patients.

While state participation in Medicaid is voluntary, all 50 states currently participate. By opting into the program, states must comply with certain federal requirements, including coverage for certain categories of people, known as “mandatory” eligibles, and services, known as “mandatory services.” They must also meet certain federal provider rate requirements. States do have flexibility in how they design and implement their programs, as states can set provider rates above the federal standard and can choose to extend eligibility to “optional eligibility groups” and offer “optional services.”

Medicaid Eligibility

Eligibility for Medicaid can vary from state to state, particularly the income level for eligibility; however, certain groups are required to be covered. These are known as “mandatory eligibility groups” and, with a few caveats, include:

  • Children;

  • Pregnant women;

  • Very low-income parents;

  • Seniors/elderly;

  • Blind persons;

  • Disabled persons

Income eligibility levels for the mandatory eligible population also vary by group.

Optional eligibility groups include:

  • SSI eligibles between the mandatory income eligibility level and 100% of the FPL

  • Nursing home residents with income falling between SSI level and 300% of the FPL

  • Children, parents, pregnant women who fall between the mandatory income eligibility level and a cap set by the state

  • Disabled persons who work and whose income level disqualifies them from SSI benefits

  • Medically needy persons requiring institutional care who exceed the SSI income eligibility levels

For states that have expanded Medicaid eligibility pursuant to the Affordable Care Act (ACA), parents and other adults must be covered up to 133% of the federal poverty level (FPL) (138% including the 5% adjusted according to the new MAGI rules)

Check out the 2014 income eligibility levels for Medicaid recipients by state.

Medicaid Services

The types of services covered from state-to-state will also vary in type, amount, duration and scope; however, every state must cover the following “mandatory” services:

  • Physicians’ services

  • Hospital services (inpatient and outpatient)

  • Laboratory and x-ray services

  • Early and periodic screening, diagnostic, and treatment (EPSDT) services for (recipients under 21 years)

  • Federally-qualified health center (FQHC) and rural health clinic (RHC) services

  • Family planning services and supplies

  • Pediatric and family nurse practitioner services

  • Nurse midwife services

  • Nursing facility services (recipients 21 and older)

  • Home health care for persons eligible for nursing facility services

  • Transportation services

Optional services include, but are not limited to, such things as prescription drug coverage, clinic services, dental services, durable medical equipment, eyeglasses, intermediate care facilities for individuals with developmental disabilities (ICF/DD), home and community based services. A state Medicaid program typically covers many of the optional services expressly mentioned here; however, states still have the option to not cover them. Thus, not every state’s Medicaid program may look the same or offer the same types of coverage.

Children’s Health Insurance Program (CHIP)

The Children’s Health Insurance Program (CHIP) is a medical assistance program providing health care coverage to an estimated eight (8) million low-income children up to age 19 whose family income is too high to qualify for Medicaid, but too low to afford private insurance. Some states extend their eligibility to include parents and pregnant women.

Like Medicaid, CHIP is administered by the state and funded through a state-federal partnership. The amount of federal match varies from state-to-state. In 2009, the Children’s Health Insurance Program Reauthorization Act (CHIPRA) was signed into law. In addition to continuing the CHIP program, CHIPRA increased funding to allow for improvements to the program, including outreach to those children who are eligible yet are not enrolled. Furthermore, Congress increased the amount of federal match to incentivize states to expand their coverage. The Affordable Care Act (ACA) extended the CHIP program through 2019 and also increased federal funding above what was previously awarded through CHIPRA.

Each state and the District of Columbia, administers their own program with broad guidance from CMS. States have three options in administering their program:

  1. Through Medicaid expansion (seven states, DC and five territories)

  2. Establish separate Child Health Insurance Program (17 states)

  3. Some combination of the two approaches (26 states)

See how your state administers its program.

CHIP eligibility

States have flexibility in setting the income eligibility criteria, with 46 states and the District of Columbia covering children up to 200% of the federal poverty level (FPL). Review a complete listing of current state income eligibility.

CHIPRA also authorized states to create an eligibility category for pregnant women, but not all states opted to provide coverage through their CHIP. Some states opted to use alternative public programs instead. Use the following links to see the federal guidance regarding changes to CHIP eligibility under:

CHIP Benefits

The types of benefits covered from state-to-state vary based on how the program is designed (see design options above) and also vary in type, amount, duration and scope. All states are required to provide the following:

  • Routine check-ups

  • Immunizations

  • Doctor visits

  • Prescriptions

  • Dental and vision care

  • Inpatient and outpatient hospital care

  • Laboratory and X-ray services

  • Emergency services

States may opt to provide additional benefits so you will need to contact your state to determine the complete list. Learn about the CHIP benefit design, including dental, and the accompanying federal guidance.

Get more information about optional and mandatory services.

It is important to note that every state’s CHIP may not look the same or offer the same types of coverage. In addition, the out-of-pocket costs including enrollment fees, premiums, deductibles, coinsurance and copayments, also vary but are limited to 5% of the family’s annual income.

To determine whether your child may be eligible for CHIP, contact:

The information on this page is provided for informational purposes only and is not intended to provide advice about your eligibility for any program or any particular insurance product for you or your family. If you have questions about whether you qualify for Medicaid or your children qualify for CHIP, you should contact your state’s Medicaid program or Marketplace (, a licensed/certified Navigator, In-Person Assister, or Application Counselor in your state, or your Marketplace Call Center.

 Step Therapy

Step therapy is a coverage restriction placed on drug coverage by private health plans and Medicare private drug plans


pwsadmin / January 15, 2018

What is Step Therapy?

Step therapy is a coverage restriction placed on drug coverage by private health plans and Medicare private drug plans. Before your plan will cover some (generally more expensive) drugs, you must try other (generally less expensive) drugs that treat your condition to see if they will be effective for you.

A growing number of insurers and government health programs (e.g., Medicare and Medicaid) are trying to contain prescription drug costs by restricting patient access to expensive medicines.

In some cases, patients will have to go through step therapy: the patients will be required to try (and fail on) a listed drug before getting access to the non-listed medicine that their doctors believe will be the best treatment for them. Sometimes the patients and their doctors may even know, from prior experience, that the listed drug won’t be effective – and even so they may have to repeat the unsuccessful effort to treat with that medicine.

Non-medical switching is another cost-saving practice closely related to step therapy. Non-medical switching happens when an insurer forces a patient to switch from a current medication to a different drug for reasons wholly unrelated to the patient’s health, typically because the preferred drug is cheaper.

How does it affect those with Bleeding Disorders? 

Fortunately, step therapy and non-medical switching are not now common in the context of bleeding disorders treatment. But the increased use of formularies and preferred drug lists in the context of other health conditions sets the stage for insurers and government payers to follow suit with respect to bleeding disorders. HFA strongly maintains that non-medical switching and step therapy are inappropriate tools in the context of hemophilia care.

  • Clotting factor products are biological products and are not therapeutically equivalent or interchangeable. No generic clotting factors exist, and there is no one-size-fits-all approach that works in hemophilia care.

  • Instead, prescribing clotting factor is a complex exercise that has to be left to hemophilia specialists in consultation with their patients. In hemophilia care a strong doctor-patient relationship is especially important and has to be respected.

  • Allowing immediate patient access to the most appropriate clotting factor product will result in better treatment outcomes (more effective bleeding control, less long-term joint damage, less pain, reduced absences from school and/or work) and lower treatment costs.

  • By contrast, switching patients from a one product to another for non-medical reasons can undermine patient adherence to therapy and worsen outcomes. This would actually raise payer costs (via additional doctors’ visits, hospitalization, extra required factor usage, permanent injury, or even death).

  • Step therapy policies, too, are unacceptable in hemophilia care because the consequences of a treatment “failure” are so serious. The risks of a major bleed, or of cumulative damage from repeated bleeds, are too high to expose hemophilia patients to potentially ineffective treatments, or to delay their access to the therapies prescribed by their doctors.

For all these reasons, step therapy and non-medical switching have no place in hemophilia treatment.


Call and write your representatives today! 

A simple phone call, letter or email goes a long ways. Stand up for your community today!

Links to 


pwsadmin / January 17, 2018

Making the call can be intimidating, follow these guidelines to make is easy!

As citizens, we have the right to petition our government and make our voices heard on important policy issues. Representatives and senators are very busy people—so busy, they often do not have the time to read the contents of the bills they sign or research how their constituents feel about them. Calling and writing are the best ways to make your opinion known.

Finding out who your Representatives are:

The easiest way to do this is to go to This is an official government website.  You first enter your five digit zip code, and if multiple matches come up, you can enter your address or full zip code to get to the correct person. Once you find the Representative’s name you can click on the link to go to their web site.

Finding out who your Senator is:

The easier way to do this is to look at the list at: You can enter your state and quickly find the Senators from that state. There is an active link that takes you to the Senator’s web sites.

Sending Email

All the Congressional web sites will have a “Contact” menu with a form to allow you to easily send email.  Be aware that Representatives NO LONGER look at emails from outside their districts. Be prepared to provide your name, address, and zip code before you are allowed to send an email.  Using a “fake” address or name will result in the message being ignored.


All the Congressional web sites will have a “Contact” menu that lists phone numbers for both the DC office and in-state/district offices.  Be prepared to provide your name, address, and zip code before you are allowed to leave a message.  Generally, unless you are a VIP, calls from out-of-state or out-of-district will be ignored. Using a “fake” address or name will result in the message being ignored.


Letters aren’t sent that much these days, but if you want to do this the same “Contract” menu will list the USPS addresses to facilitate this. Letters should be addressed to your representative’s office, locally or in Washington, DC.

What to write

Here are some basic guidelines for getting your message across and taken seriously:

  • Identify yourself as a constituent, come to the point quickly, and keep your message under one page. You can include attachments or enclosures (articles backing up your point), but do not overwhelm the reader.

  • If you do not know the senator/representative’s position, ask what it is and offer factual evidence why she or he should support your view.

  • Avoid profanity or insults. If you disagree with your representative’s position, state your objections clearly and provide facts to explain why you believe she or he should support your view.

  • If you know of a particular bill under consideration in the Senate or Congress, reference that bill in your letter so the reader will know that your issue is timely.

  • Send in a typed or neatly handwritten letter on clean white paper or stationery.

  • Remember that in most cases “the reader” will be a member of the representative’s staff, not the representative personally; however, address your letter to the representative or senator.

  • Provide contact information, including home address and phone, especially if you want someone to contact you.

What to say on the Telephone

  • Identify yourself as a constituent and ask to speak with the member of the staff responsible for researching and tracking the senator/representative’s position on the particular issue. Remember or write down the staffer’s name in case you need to call back or follow up.

  • Assume that you will speak with a staffer, not the senator/representative personally. Due to the demands members of Congress face, the staffer will likely know more about the issue anyway.

  • As with your written correspondence, you should remain polite in your dealings with congressional staff. Insults, bullying, yelling, or profanity will hurt, not help your case.

  • At the end of the call, thank the staffer for their time and ask if you can be of further help to them in researching your issue.


Why it matters

It has been extremely difficult to find coverage for the bleeding disorder community. The current live bills can play a huge role in non-medical switching and if your family remains covered or not. Keep up to date and make an impact today!