View Full Version : Beth Sufian's guide to insurance

11-17-2012, 12:45 PM
Passing along this information:
Children and adults with cystic fibrosis (CF) need some form of insurance coverage
to help pay for medical care and medications needed to treat the disease.

Beth Sufian, the author, has developed a general guide with Gilead Sciences, Inc.
to assist people with CF, their families, and healthcare providers in
identifying potential health insurance policies offered by an employer,
and government programs such as Social Security benefits, Medicaid, Medicare,
and state-government programs. In addition, the Affordable Care Act
may help people with CF access coverage.

To download a copy of the guide, click here. (http://41224.thankyou4caring.org/page.redir?target=http%3a%2f%2fwww.cfri.org%2fpdf% 2fA_Guide_to_Health_and_Social_Security_Benefits_f or_People_with_CF_11.7.12.pdf&srcid=1551&srctid=1&erid=1159077&trid=0cc781c3-5830-453a-bca9-7ed002329aff)

After reading the guide, you may have questions about your ability to
access insurance coverage or Social Security benefits. At the end of the guide,
you will find a list of additional resources for information.

You can also contact the Cystic Fibrosis Legal Hotline or
the Cystic Fibrosis Social Security Project at 1-800-622-0385.

isabella Mendoza
01-21-2013, 09:43 PM
Is it just me or is anyone else out there terrified of their children turning 26 with no job that covers them? I have one 25 y/o son w/cf and he will never be able to afford all the co-pays and struggle with all of the insurance clerks, pharmacy "managers" and the CF center bureaucrats that NEVER CALL YOU BACK! This has been my husband's full time job since I went back to work full time. I am willing to do this for as long as humanly possible (as is my husband) but when he can't be on my insurance anymore it will be alot harder. And, the job he has now (he is still on my insurance) has crappy insurance and the copays will be astronomical. He can't make more than about $20,000 at it, and he will never have enough sick days to cover what he needs. I thought the ACA would help, but since we live in Texas and the state has decided not to expand Medicaid, that's not an option unless he's disabled, which, thank god, he isn't. This feels like a catch 22. Thoughts????

08-12-2013, 03:27 AM
Yes because I am in that situation. I pay $1000/month for my own healthcare. in 2014 obama care kicks in. it see signsof fit already. let's hope is covers cfers

08-12-2013, 11:53 PM
It seems to be a kind of vanishing point awaiting all of us some day. I could no longer work full time for good at age 51, ending my SSI/FICA contributions. My dear wife had a good job with the State so my insurance transition was seamless. For educated people we have a lot of apprehension over SSDI, Medicaid, and other State or Federal assistance and have done essentially nothing. The matrix of SSDI and Medicare/private insurance and income has a Pandora's Box effect where we are fine right now and fear opening up problems until we must.

On our next birthdays I turn 64 and she 65. We must be looking at SSI/SSDI and Medicare and the best insurance to manage our health, especially mine. Social Security isn't likely to have more benefits in a year or two. Unless Congress gets incredibly generous and our economy booms suddenly, less benefits await me now compared to applying five years ago. Ignorance seems to end when things get desperate and we are approaching the vanishing point, somewhere near.

I need exactly what you posted. Thanks,


04-25-2015, 07:37 PM
Thanks for the guide, Beth. Bottom line: if you are single without family, you are screwed.

04-25-2015, 07:38 PM
Simba, LittleLab, Isabella Mendoza, CrisDopher or anyone else: What did you all end up doing when the ACA kicked in? Are you on insurance through the Marketplace? Does it work well for you? Is it affordable and do you like the coverage you have? We are trying to figure out insurance for next year when my son turns 26. I read part of Beth Sufian's guide above by Crisdopher but it was old and it seemed it would have changed by now. In addition to these other questions oes anyone know how to get her new guide?

I work, so I am able to pay for my own insurance. I pay $562 a month which is much cheaper than what I was paying before ACA kicked in. I pray the ACA stays or I am in big trouble.

04-26-2015, 06:21 PM
I pay for an ACA plan for my 18 year old Daughter HAP Platinum plan 1500 max out of pocket $210/month ($250 with dental and eye coverage) this is in Michigan so it may be a bit different but I would guess a 26 year old would be closer to her price.

04-26-2015, 07:08 PM
Whatever state he ends up in he may want to check if they have any supplemental coverage options. Michigan CF's can get their co-pays covered by the Children's Special health care. Cf and a couple other can get even if they're over 18. The premium is based on how much you make. $120/year for my Daughter since she is over 18 and has no income

04-27-2015, 09:20 AM
I just want to make sure everyone knows that the Guide to Insurance published by Gilead many years ago is now outdated. We are in the process of obtaining funding to produce an updated guide.

In the meantime, please contact the CF Legal Information Hotline at 1-800-622-0385 or email [email protected] The Hotline is sponsored by funding from the CF Foundation. The Hotline is operated by the CF Legal team at the law firm of Sufian & Passamano, LLP.
All calls and e-mails are confidential and the service is free. The Hotline has helped over 40,000 people with CF, their family members and healthcare teams with CF related legal questions since 1998.

The CF Legal Information Hotline can provide information on the Affordable Care Act ("Obamacare") and information on certain state programs that exist that may help with medical costs. Unfortunately there are only a limited number of states that still provide state sponsored programs to help people with CF obtain insurance coverage (Michigan, New York, California and approximately 10 other states).

The Affordable Care Act is a federal law and it did away with pre-existing condition clauses. This makes it much easier for people with CF to obtain health insurance coverage. However, as one person noted, in the 23 states that did not expand Medicaid to low income adults in need of coverage it may still be difficult for those with CF who are low income and do not have SSI benefits to obtain affordable coverage.

Many times the adult with CF may in fact be eligible for SSI benefits which will provide Medicaid benefits. The CF Legal Hotline team can explain the specific eligibility criteria for SSI benefits and provide information about any possible state Medicaid waiver program that may provide access to Medicaid in limited situations.

The CF Legal Information Hotline was started in 1998 by Beth Sufian, an attorney and adult with CF, to make sure that people with CF, their family members and healthcare teams had accurate information about the laws that protect and help people with CF.

It is important to obtain correct information about access to health insurance coverage and Social Security benefits. Please feel free to contact the CF Legal Information Hotline at 1-800-622-0385 or [email protected] The CF Legal team can arrange a specific time to speak on the phone once they receive an email requesting a call.

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