Topeka Clinic Opens; Chemo Case Update

There have been quite a few stories involving the Amish and health-related issues lately.  Let’s start with the story of a new clinic in Indiana.

Community Health Clinic

Following a visit to Indiana this summer I mentioned the soon-to-be-opened genetic clinic in Topeka, Indiana.  A week ago was the official opening of the Community Health Clinic, though it has been seeing patients since September.

Operations manager Jared Beasley describes the clinic’s mission for the Fort Wayne News-Sentinel:  “We’re a genetics clinic, aimed at helping the Amish, Mennonite and rural community, especially those with metabolic disorders.”

Emphasis is placed on managing disease from both the health and economic standpoints.

Through proper management, says Beasley, “we can significantly reduce the need for what I’ll call crisis intervention or expensive hospitalization, or the need for travel to large specialty clinics outside the area.”

That is appealing to Amish on multiple levels.

Similar clinics are found in Pennsylvania (The Clinic for Special Children in Strasburg) and Ohio (DDC Clinic in Middlefield).  This will provide a more accessible treatment center for those afflicted in not only the immediate region but for patients further west.

Sharing burdens, negotiating bills, finding exemptions

In a related topic, CHC clinic president Dennis Lehman spoke with NPR recently about the Amish approach to health care.  It is about burden-sharing, he says (Dennis is Amish).  He also brings up the job of the bill negotiator, who bargains down prices for the community (comparable to what insurance companies do).

I had a chance to talk with Dennis this summer.  Our discussion brought home to me the importance of the bill negotiator’s work to the community.  Thanks to his behind-the-scenes efforts, an immense amount of money can be saved.  The person who negotiates in this community has what you would call a very important job, though I wonder how many realize what he does.

The interview, which can be listened to or read here, also addresses Amish navigation of the new health care law.

Though there is a religious exemption for the Amish, not all Amish–specifically those who work for non-Amish businesses–fall under the exemption.  Despite “substantial hurdles”, a lawyer working with the Amish is optimistic this can be overcome.

Ohio Chemotherapy Case

I have been sent articles by a number of readers lately regarding the case of Sarah Hershberger.  Sarah is the Amish girl who was ordered this summer to have chemotherapy to treat leukemia.

Sarah had initially undergone chemotherapy, but her parents removed her from the treatment due to adverse physical effects.  After a previous decision in favor of the parents was overturned, last month an Ohio court appointed a guardian to make medical decisions for Sarah, to ensure she received chemo treatment.

However, according to one publication, Sarah’s parents have removed her from the country and have been treating her with natural treatments.  Furthermore, she is described as “completely recovered”, according to Sarah’s father.

piece written in response to this claim asks for the evidence of her remission. The surgeon who writes it suggests that this may be the result of the initial chemotherapy:

Most likely what happened is that the chemotherapy shrank Sarah’s tumors to the point where they are no longer detectable on CT scans. This is a common initial outcome after early rounds of chemotherapy. The problem with lymphoma is that, although it is fairly easy to put lymphoma into an apparent complete remission, making that remission permanent is difficult.

According to the writer, there is a chance of relapse without maintenance chemotherapy, with dire implications for Sarah if she does relapse:

Worse, relapsed cancer is always harder to treat. The first shot at treating cancer is always the best shot, with the best odds of eradicating the cancer. Letting cancer relapse through incomplete treatment breeds resistant tumor cells the same way that not finishing a complete course of antibiotics contributes to the development of resistant bacteria.

As the above stories demonstrate, Amish make use of both cutting-edge medicine and traditional remedies. In an ideal world, each has its place.  In the case of Sarah, both have come into play.

It would be wonderful it she were in fact in permanent remission, but it’s hard not to be skeptical given the circumstances, including what seem to be legitimate concerns over potential relapse.

Sarah’s case has become the latest arena for argument between proponents of conventional and non-conventional treatments.  Regardless of who ends up “claiming victory”, hopefully the story ends well for Sarah.

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    9 Comments

    1. Osiah Horst

      We visited recently with Wayne and Joyce Brubacher from Goshen, Indiana, who have adult children with MSUD. They have been involved in the new clinic, I believe, and are excited about the possibilities this clinic will provide to families like theirs. Although it probably won’t benefit their family, they do take an active interest in this work.

    2. Ed from NY

      Erik, thanks as usual. It seems the Amish approach to healthcare certainly brings out the best (CHC, DDC, Clinic for Special Children) and the worst (“natural cure” scams) from the surrounding community.

      The article about the girl “escaping” the United States and the family going underground overseas raises as many questions as it answers. Questions like – do they plan to stay overseas forever? Did they legally immigrate to that country? Is the healthcare (“natural” or otherwise) up to U.S. standards?

      I hope the girl has dodged a bullet with just the initial chemo but I cannot help but think this family was seriously misguided in their medical choices Perhaps also, the hospital needs to better tailor its services to its Amish population, as have the other clinics you mentioned.

      1. Sarah's Natural Treatment

        Thanks Ed, according to the article linked above, the family would like to return (if they haven’t already). I’d assume they either went to Canada or Mexico.

        Amish will go abroad for more unorthodox treatments or just to get a procedure done at a lower cost. Mexico is popular in this regard. I know of one Amishman whose brother was treated for MS in Mexico last year. Another went to a Central American country (Honduras I believe) for an experimental treatment.

        I can’t say much about what treatment was administered to Sarah…this looks like the relevant bit from the piece above:

        Three doctors that have treated her with a natural, biochemical protocol using nutrition, supplements and plant extracts have declared Sarah cancer free based on cat scans and blood tests—confirmed three times.
        http://journal.livingfood.us/2013/10/27/amish-girl-being-forced-into-experimental-chemotherapy-taken-out-of-us-and-recovers-with-natural-treatment/

      2. Sara Mandal-Joy

        NOT all natural treatments are scams

        “and the worst (“natural cure” scams) from the surrounding community.”

        Ed – there are so many natural treatments that work at least as well, and sometimes better than what the AMA allows or accepts. i think there are many reasons for that. Are there scams? Yes, absolutely, but I find our drug company funded medical schools to also be a part of a “scam” at times – though unwittingly…..
        Sara

        1. Sarah

          Uhh: "unwittingly"?

          “drug company funded medical schools to also be a part of a “scam” at times – though unwittingly…..”

          Even I know that if a school accepts funding from an enterprise the “unwittingly” part is negated….

          These schools often accept not only “funding” (could just as easily be called bribery?) but utilize drug company-employed lecturers and and drug company-supplied books (usually mandatory and we students had to pay for them nonetheless)to “teach” various classes. This not only results in indoctrination (correct or incorrect) but hampers the passage/development of information about diseases or conditions for which there is no profitable pharmaceutical (or device-dependent) treatment, since the idea is to get students up to speed on how to return the drug-company’s investment in them as students.

          An approach such as these folks are taking in Topeka is well-advised, I should think, both as a way to provide legitimate good care and to financially hold the price of such care down to essential costs. Nobody objects to the idea of paying reasonable costs for helpful treatment….these folks appear to be finding and making a way for it to happen.

        2. Ed from NY

          Sara, since as of yet, there is no known cure for cancer, I would posit that anyone claiming to sell a “natural cure” for cancer IS ABSOLUTELY SELLING A SCAM.

          That said, you’re right, a lot of modern medicine is based on natural remedies. And indeed, when a natural ingredient is studied, the chemical structure analyzed, the efficacy noted, toxicity measured, dosage tested … well, you have a proven treatment. Why not put any “natural” cure through the same rigorous process regular medicines get?

          Reflecting further, it seems that much of our modern medical system has become so bureaucratized, so paperwork-intensive, that we should not be surprised some people simply throw their hands up in the air and “opt out” altogether and look to the natural-cure purveyors. That’s why I think the clinics Erik mentioned that cater specifically to the Plain community are so interesting. It remains to be seen if the new Affordable Care Act will help eliminate the bureaucracy and make it easier for people to get care — or make things even more complex and send even more people to the “natural medicine” camp.

          1. Sara Mandal-Joy

            agree to disagree

            Ed, we’re going to have to agree to disagree. Your comment” “Sara, since as of yet, there is no known cure for cancer, I would posit that anyone claiming to sell a “natural cure” for cancer IS ABSOLUTELY SELLING A SCAM.” The point,. from my perspective is that there is no AMA (drug company sponsored) cure for cancer. There are MANY folks who have recovered from cancer using natural means. The AMA does not sanction such options, and does not research them. So all “proof” is anecdotal. But when someone is told they have late stage cancer and only months to live, but then recovers using natural methods – this is a significant anecdote. I’m not interested in AMA’s practice of trying to pull out what they consider to be THE active ingredient in natural cures. There is never ONE active ingredient. It is in the whole process, an entire change of lifestyle (diet, stress levels, etc.), the whole context of a “natural” protocol, including whole herbs/foods, that health is restored. it is not one magic chemical bullet that kills the cancer. It is a complete change of mind, heart, way of life, including various herbs and/or foods IN their whole, natural context. I’ve directly seen this process to work, over and over, with way too many people for it to be anecdotal. If the whole way of life is not considered, it seldom works, no matter what combination of “natural ingredients” are used. Life style changes alone are not enough either. It requires a whole physical, mental, spiritual housecleaning, so to speak. Sometimes the piecemeal approach has had limited success, but that does seem more “anecdotal”. And sometimes nothing works – sometimes what is accomplished in the change of way of life is a gentle understanding, acceptance, of a time of transition. But your statement/stance leaves no space for the hundreds of folks I personally know who have recovered from cancer “naturally” – using a variety of methods. And, no, I’m not a health practitioner of any kind, not peddling anything. Just have had close friends who have gone through this journey, so I tuned in, and became somewhat immersed in the stories/lives of those who risked listening to their own hearts and bodies rather than to the cut and dried options offered by the AMA. I do want to qualify this by saying that many individual doctors have an openness to such new kinds of thinking, approaches to health. Some acknowledge the limits of what they have to offer, particularly when there are significant limits, statistically – and are sometimes amazed at the results. Sara

    3. Diane Wise

      Natural Treatment

      I know an Amish women who was diagnosed with leukemia. With blessings from her physician she began a strict natural treatment. The physician, whom I work closely with, was hesitant the natural treatment would work; however, she told him if it did not begin to work quickly, she would consider other options. For several years now, every time she has her blood checked, the numbers get better and better. Her physician and myself are amazed. She’s doing wonderful after 5 years of being diagnosed.

    4. Linda

      Topeka Clinic, Sarah Hershberger

      After I saw the 2:27 video accompanying the article, “New clinic helping communities with high rate of genetic disorders,” I realized that Dr. Zineb Ammous, who specializes in genetic disorders, is a female! Because Dr. Morton in PA is a man, I just expected Dr. Ammous to also be a man. The Nov. 4 article and video about the Topeka, Indiana, clinic can be seen at:

      http://www.abc57.com/news/local/New-clinic-helping-communities-with-high-rate-of-genetic-disorders-230566721.html

      I appreciate both the mainstream news media articles and the alternative blogs telling us about Sarah Hershberger’s chemotherapy case. It’s interesting to read both sides of the story, especially when it can be given in a factual, civil way. Erik, thanks for your article. Corrie ten Boom said, “The measure of a life is not its duration but its donation.” Sarah’s case may make interesting research if the family and the doctors would be open to it.

      Sarah Hershberger’s Amish grandfather, Isaac Keim, is featured in a 37:42 audio interview, “10yr old Amish girl flees U.S. to escape chemo.” Nov. 2, 2013. At:

      http://www.youtube.com/watch?v=vzSUnSem1tI

      This 24-page document (link below) is from when the Medina County Probate Court was ordered to appoint Schimer as guardian of S.H. for purposes of making medical decisions on S.H.’s behalf. The Date of Judgment Entry is October 1, 2013, and is in Re: Guardianship of S.H. [Cite as In re S.H., 2013-Ohio-4380.]
      On page 13, it is acknowledged that “…the treatment itself may damage her other organs and there is an increased risk of contracting other cancers. S.H. has a small but appreciable risk of
      dying from the treatment itself.”
      Page 9 mentions Wisconsin v. Yoder,(1972). Here’s the link:

      http://www.supremecourt.ohio.gov/rod/docs/pdf/9/2013/2013-ohio-4380.pdf