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Medical Records And Increase In Continuing Disability Reviews

In the past three months CF Roundtable readers have asked for an assessment  of Congress’s attempts to repeal the Affordable Care Act. Most people in the CF community are very concerned about the United States Congress and its attempts to repeal the Affordable Care Act. These are scary times. However, we cannot put our heads under our pillows and say it is just too upsetting to be engaged. We must all stay informed about efforts by our government to deprive our community of the health insurance we need to live longer and healthier lives. Every person with CF has benefitted from at least one section of the ACA, even if they do not realize it.


Current proposals in Congress keep a few sections of the ACA but drastically change or delete other sections. Even if only certain parts of the law are repealed, many people with CF will suffer. For example, if the subsidies that thousands of people with CF receive to help pay monthly insurance premiums are no longer available, then thousands of people with CF will not be able to afford health insurance coverage.


If Medicaid is no longer available to adults who have low household incomes, then thousands with CF will lose Medicaid coverage. Currently, under the ACA Medicaid expansion, 32 states offer Medicaid to adults who meet low income criteria. Many years ago the U.S. Supreme Court held that the ACA’s mandate of Medicaid expansion to low income adults could only be voluntary and that states could not be forced to expand Medicaid. After this decision, 18 states did not expand Medicaid to low income adults.


In those 18 states adults who have low income cannot access Medicaid unless they are also receiving SSI benefits. Prior to the enactment of the ACA, in most states the only way adults over the age of 18 could obtain Medicaid coverage was if the adult also received SSI benefits. In addition, women who were pregnant and had low income could be eligible for Medicaid but only during their pregnancy and for a short time afterward.


Children under the age of 18 who live in low income households are eligible for Medicaid. The ACA did not affect Medicaid benefits provided to children living in a low income household. Repeal of Medicaid expansion will put the CF community back where we were before passage of the ACA in the 32 states that did expand Medicaid to low income adults.

I am writing this column on March 15, 2017. It is unclear if the American Health Care Act will be approved by the House of Representatives. If the House passes the bill it is unclear if the Senate will vote to approve the law.

People with CF should continue to let their representatives know the importance of access to Medicaid, including premium subsidies, no caps on coverage, no pre-existing condition clauses, limiting the ability of a dependent child to stay on a parent’s policy until age 26 and the right to have an independent review of an insurance company’s denial of coverage for medical treatment. In addition, the ACA mandates all health insurance policies provide coverage for 45 medical services. These are just some of the sections of the Affordable Care Act that have helped people with CF. The ACA also has sections that help Medicare recipients.

The CF Foundation has a section of its website that helps you send e-mails to Congress. Go to: for more information. Many legislative experts say that calling your Congressman’s office is also effective. Often it is hard or impossible to reach your representative’s office in Washington, DC. However, it is usually easy to reach their local office, often called a satellite office. It is important to express your concern about efforts to make it harder for people with CF to access health insurance. Go to: to access a list of phone numbers for your Congressional representatives.

In just the past few days, members of Congress have proposed changes to the proposed American Health Care Act. These proposed changes are based on advocates who told Congress the bill needs to provide more help to older Americans. Congress is listening to those who speak out. Your voice can make a difference.

A few people tell me they have good insurance through their employer and so they are not worried if the ACA is repealed. Many sections of the ACA apply to ALL health insurance policies. For example, the ACA mandated an independent review of an insurance company’s denial of coverage for medical treatment or services. The ability to have an independent review has helped many with CF who have had coverage for transplants, medications or IV treatment denied. This section of the ACA applies to all health insurance policies.

In addition, the most vulnerable people in the CF community are those who live in poverty and rely on Medicaid as their sole source of insurance coverage. Those of us who are lucky enough to have good jobs or helpful parents need to speak up for their needs. We are a strong community of caring individuals and our fellow brothers and sisters who have CF need us to raise our voices on their behalf.

During such uncertain times we can find hope in many places. First, we can all find comfort in knowing that there are scientists in laboratories across the country and around the world who are working very hard to bring us new and better medications to treat CF. I am very grateful for their efforts. Second, we can find comfort knowing there are many organizations working to help us. I am grateful for Dr. Preston Campbell who is leading the CF Foundation at such an important time. He cares not just for the fortunate members of our community. He also cares about those with CF who have very little and face great hardship. Dr. Campbell’s efforts to do what is right for every person with CF are an inspiration to many.

Sue Landgraf, who leads the CFRI, is also making sure that various needs of the CF community are met. For example, CFRI offers funds to help people access counseling services and offers an excellent course on mindfulness led by the amazing Dr. Julie Desch, an adult who has CF who gives back to her community every day. CFRI also funds research and support groups for those living with CF or who have a family member with CF.

Boomer Esiason and the Boomer Esiason Foundation address a number of unmet needs in the community, by providing transplant grants to those in need, offering educational scholarships and raising money for research. There are also so many other smaller groups that provide help to people with CF.

None of us has a crystal ball to predict what will happen in Congress but we should find some comfort in knowing that there are many who are working to help the CF community. Our energy and efforts are needed to continue to help each other. Writing an article for CF Roundtable or becoming involved with the organization is a good way to impact the lives of others in a positive way.

Two other questions were posed by readers.

  1. I have Medicare and I need to buy a Medicare supplement policy to pay for the Part B 20 percent co-pays. However, every time I apply for a policy I am turned down. Do they have to sell me a Medicare supplement policy?


ANSWER: Approximately half of all states do not require an insurance company to sell a Medicare supplement policy to a person who has Medicare because he is also eligible for Social Security Disability Insurance (SSDI) benefits. In states where there is no requirement that an insurance company sell such a policy to a person who receives Medicare because he receives SSDI benefits, it is difficult (and in many states impossible) to find an insurance company who will sell such a policy. Medicare Part B is the section of Medicare that provides coverage for outpatient services, such as physician office visits, blood work, X-rays etc. Medicare Part B also provides coverage for a limited number of prescription medications.

Medicare Part B pays 80 percent of the allowable charges and the Medicare recipient must pay the other 20 percent. If a person has a Medicare Supplement policy, that policy will typically pay the 20 percent portion that Medicare does not pay. There is no cap on how much a person can pay out of pocket in terms of the 20 percent cost share under Medicare Part B.

Most CF medications that are covered under Medicare Part B will have patient assistance programs (PAP) that may provide assistance paying the 20 percent co-pay for the medication. However, most PAPs have income eligibility guidelines. Those individuals whose household income is over the allowable amount will not be eligible for help from the PAP. Each PAP has its own household income eligibility guidelines. There are a few drug companies that will NOT provide co-pay assistance to a person on Medicare.

  1. If I get married and my spouse’s income results in my losing SSI benefits because his income puts us over the household income amount for SSI, will I lose my Medicaid?  If I lose my Medicaid is there another way for me to qualify for Medicaid?


ANSWER: Marriage will result in the new spouse’s income and assets being considered by Social Security for purposes of determining eligibility for SSI benefits and for purposes of Medicaid eligibility. If the household income and assets are over the allowable amount, then the person loses SSI and Medicaid. In some states a person may be eligible for Medicaid even if the person does not have SSI, but the person will still have to have a household income that is below the allowable Medicaid income and asset criteria.

Many people with CF tell Medicaid representatives that they should be allowed to keep Medicaid benefits because otherwise they will not be able to access health insurance coverage. Sadly, this is not a consideration under Medicaid rules.

Social Security considers a person to be married if the person “holds themselves out as DB married.” If a person does not obtain a marriage license, Social Security can still find the person is married under the Social Security definition of marriage.

If you have other questions, feel free to contact the CF Legal Information Hotline at: It is best to e-mail in order to obtain a specific time to talk. Watch the CF Roundtable blog for answers to other questions. Nothing in the above column is meant to be legal advice but is meant only as information.

Beth is 51 and has CF. She is an attorney who specializes in disability law and is a Director of USACFA. You may contact her with your legal questions about CF-related issues. Email:

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