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Equal Access to Treatment for All with Cystic Fibrosis in the US?


Just in from Tamika Grubbs:

Cystic Fibrosis is the same disease for at least 30,000 people in the united states and approximately 70,000 worldwide, but depending on where you reside and what insurance you have there could be big differences in your access and quality of care.

I am a nurse, and a United States Army veteran. I received my CF nurse coordinator training directly from adult CF patients, families, clinicians and the CF Foundation. I am the founder of Cystic Fibrosis Continuity of Care. CFCOC is a nurse advocacy organization that consults with healthcare entities to provide operations efficiency and solutions surrounding the care of CFers and other people who suffer from breathing conditions.

Call me crazy but I believe that patients with the same disease should have the same access to treatment. This is equal healthcare in my simple nurse mind.

What does that mean? Let’s entertain that very simple thought for a moment. You may even be as naïve as I was once and foolishly think that this is already the case especially for people born with a chronic genetic disease that affects their breathing?

Pretty recently a study was published showing us that CFers on Medicaid live an average of 10 years less than those with private insurance in the United States. The article in the New York Times pointed out why Canadians on average live 10 years longer than Americans with the same disease, largely because of differences in health insurance systems.

“Canada has universal health coverage. U.S. patients with private health insurance had similar survival to their Canadian counterparts. But Canadians survived longer than U.S. Medicaid patients and those with no insurance, the study found.”

“A higher proportion of Canadian CF patients receive a life-prolonging lung transplant, 10.3 percent compared to 6.5 percent of U.S. patients.”

“One other factor: Canada adopted better nutritional care for cystic fibrosis in the 1970s, a decade before the U.S., a difference likely to be affecting survival only among older age groups.”

What is Medicaid and why do we have it?

“Medicaid is a health care program funded jointly by the federal government and state governments. It provides free or low-cost health care coverage for low-income individuals and people meeting certain eligibility requirements, such as individuals with disabilities. For people with CF, Medicaid helps them afford the treatments, medications and inpatient and outpatient care they need.”

How many CFers are on Medicaid?

Almost 45 percent of people with cystic fibrosis receive some form of Medicaid according the cystic fibrosis foundation.

To assist with the disparities among this at-risk population the state of FL had an Adult Cystic Fibrosis Waiver Program under their Medicaid waiver program.

“The purpose of the Medicaid Adult Cystic Fibrosis (ACF) Waiver is to promote, maintain, and restore the health and functional ability of eligible recipients and to minimize the effects of illness and disability, in order to delay or prevent hospitalization or institutionalization. The ACF Waiver is designed so that individuals with ACF receive services that enable them to remain in the community and minimize the risk for hospitalization.”


This program provided an opportunity for many services but the greatest one in my opinion is that of a waiver specialist or CF case manager. This person serviced as a liaison and advocate visiting the patients home, making recommendation, and assisting providers and patients with getting the prescribed services and therapies not otherwise covered by the Medicaid plan.
This program is currently in the process of being transitioned into the states long-term care program.

The concern in Florida with this transition is similar to the general public about Medicaid across all states. Medicaid recipients already have a life expectancy of approximately 10 years less than private insurance recipients in this country.
Patients, families, advocates and clinicians are rightfully concerned that any healthcare cuts to an already vulnerable population could be detrimental and in human considering the disparities that already exist.

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  1. Dan Graettinger
    October 3, 2017 at 1:28 am

    I guess my reply is to say that I, as a patient on Medicare in the U.S., have never felt that my fellow citizens OWE it to me to pay for my medical care. I am grateful to receive help from Medicare and from the various foundations that offer co-pay assistance. But I do not feel that it is OK for me to take these things for granted or to believe that my government or my fellow citizens owe this to me. I could never demand that I receive these benefits, just as I could never demand that a doctor or nurse give me care for free. I think it is essential to remain grateful and never become demanding.

    • Megan
      October 13, 2017 at 4:50 pm

      Dan, I could not disagree more. Most CFers on Medicaid are unable to work due to their disease. How can they pay for insurance? Should they just die because they were born with a disease. That is not the country I want to live in. We believe school is a right regardless of the parents ability to pay for it. Should we only educate those kids who were born to wealthy parents? We believe clean water, police and fire are rights. What if the police or fire department refused to show up to trailer parks because they didn’t contribute enough in taxes. That’s not the country I want to live in. It sounds like you are in a situation where it’s nice to have the help of Medicare but it isn’t life or death. For many it is , and there is nothing they can do about it. If you can’t breathe, you can’t work. They didn’t chose this.

      • Shawn Francis
        October 25, 2017 at 5:08 pm

        “We believe school is a right regardless of a parents ability to pay for it”

        Huh – no “we” don’t . “We” understand the difference between unalienable rights (God given) and the right of others to be charitable towards us or motivated to solve our problems for whatever price they demand.

        The more “we” turn this country into what ever “you” think you have the right to turn it into, the more crippling the expense of our problems become.

        Education should be one of the cheapest things to convey from one person to another but “we” have made it almost as expense as an epi-pen or inhaler or sterile salt water or a vitiman d tablets or Orkambi and “I” resent the fruit of my labor being taken from me to pay for things my talent could afford much more cost effectively if “we” weren’t to busy pretending to be more loving and caring than “me”.

        It terrifies me to think that the suffering i put up with will actually get hopelessly worse as time goes on but it terrifies me even more to know that a government big enough to give me everything I need is a government big enough to take everything I have.

        I didn’t choose a lot of the things I was born with. That doesn’t obligate you to fix them for me government fiat. No matter the righteousness you may feel in doing so.

  2. Tamika
    October 9, 2017 at 9:02 am

    Hello Dan,

    Thank you for your comments on this important topic. I couldn’t agree with you more. I’ve also never felt that our country owed anyone anything. Thankfully we live in the land of endless opportunities.

    I think we can both agree that there is room for improvement in healthcare. We know that unfortunately with most chronic conditions if not all, delays in prescribed treatment can result in very expensive hospital admissions.

    Recently the Commonwealth Fund rated the U.S. healthcare system as the worst among the 11 developed nations it analyzed as part of an evaluation conducted every three years.

    “The Commonwealth Fund focused on care process, access, administrative efficiency, equity and health care outcomes, studying 72 indicators within those fields. The 11 countries analyzed were Australia, Canada, France, Germany, the Netherlands, New Zealand, Norway, Sweden, Switzerland, the United Kingdom and the United States. In addition to ranking last or close to last in access, administrative efficiency, equity and health care outcomes, the U.S. was found to spend the most money on health care.”

    It certainly isn’t an easy fix and the answer isn’t likely as simple as adopting another country’s healthcare system.
    However, as a nurse I can’t ever stop hoping, praying and actively pushing for equal healthcare because these studies point out facts that are visible to the plain eye.

    Clinically the doctor should be able to prescribe treatment and the patient receive that therapy in a timely manner. The fact is that this doesn’t always happen. The result is often associated with a very expensive hospital admission regardless of the state or insurance.

    • Shawn Francis
      October 25, 2017 at 5:15 pm

      Why did the US used to be the best healthcare system in the world and isn’t any longer?

      Pretending to be a free market is the same as being one. No matter the number of villains that keep promoting the idea that interfering with freedom will make it better and then blaming freedom when those interventions fail.

  3. Sonia
    October 13, 2017 at 8:02 pm

    Hi, although I’m not a u.s citizen I can see and have experienced how awful the system can be when I visited the USA and got very sick , only to be told by my travel insurer I wouldn’t be covered as a “pre.existing condition”. I turned up to the emergency room barely able to breathe with a flu I caught and was told how much it would be !! I was floored. I had to go to a homeless persons clinic to get a prescription but that too I couldn’t afford to get filled. Luckily the medications I bought from my home country Australia and a week in my hotel room with lots of PEP therapy and nebulizer got me better.
    In Australia we have a universal system called medicare. Everyone is treated equal, rich or poor. If you can’t work you’re able to claim welfare and given a concession card for medications that cost $7. Even if you do and can work the most you pay is $35. The govt here has a system where once you’ve paid $1,200 in a year if you pay the $35 per drug , you get them for $7..if you’re on concession cards then for the rest of that year they are free.
    Granted we don’t have a perfect system though. Sometimes you do have to wait weeks for a bed..and in a major city like Sydney, there are 2 children’s hospitals that treat c.f but you have to go to the adult hospital on your 17th birthday. Then there are 2 adult centres. Both overfull , and again wait times for a bed can be long , and don’t have single rooms but no c.f patient is put in a room with another patient.
    We did however discover hypertonic saline, and a paper recently written “pep vs vest” by my physical therapist shows Pep actually reduces exacerbation in c.f more than the vest.
    Its not a perfect system , but it is fair . If someone is homeless or poor they are treated exactly the same way. Isn’t this what health care should be about ? A right not a privilege ?

  4. Shirley
    November 9, 2017 at 9:57 pm

    I was diagnosed with Idiopathic pulmonary fibrosis. After a two-week stay in the hospital, I was home with oxygen. I was still coughing badly, breathless and my chest pain was ongoing. I had a heart attack six months ago. I’m 62, female, and no longer working. I lost 36 pounds in 1 month as my coughing causes me to vomit non-stop! I was so tired. My blood pressure has always been high; it averages at 193/88, I was on minimum daily dosage prednisone (7.5 mg), azathioprine and N-Acetyl. They put me on 6 liters of oxygen and steroids. The pulmonary doctor told me that I was going to die and said there was nothing he could do for me,I started on Health Herbal Clinic IPF Herbal formula treatment in June 2017, i read alot of positive reviews on their success rate treating IPF disease through their Herbal formula and i immediately started on the treatment. Just 7 weeks into the Herbal formula treatment I had great improvements with my breath and my chest pain was no more. I am unbelievably back on my feet again, this is a breakthrough for all Pulmonary Fibrosis sufferers, visit Health Herbal Clinic official website www. healthherbalclinic. net or email [email protected] healthherbalclinic. net.