Monday, March 2, 2015

Instagram

I've had a Facebook page for this blog for a while now. But recently I have been excited to see a community starting to form! People are liking and commenting on my posts and getting connected, not only with me but also with each other. It's pretty exciting! So if you are on Facebook, please consider "liking" From This Point. Forward's page, which will add my posts to your Facebook newsfeed. And then feel free to join the discussion!

In the spirit of "get with the times, Mariah!" I also recently got myself a Twitter account. It has been really interesting to see how things get connected on Twitter. The #ChronicMom experiment was very interesting and it has been a great place to share quick updates. If you are on Twitter, I'd also love it if you would follow me there: @MariahForward.

And, if you want to see more pictures of my adorable children, I also started using Instagram again recently. I'll also try to share pictures of the realities of being a mom with RA - like the one included in this post.

I'm connected to the interwebs! Get connected to me! Because we are all in this together.

Action Needed From Coloradans!

Do you live in Colorado? If so we need your help! 

Remember when I recently testified about SB71 at the Senate hearing? I'll be testifying again this coming Thursday in the House Health, Insurance and Environment Committee hearing on the same bill. We need the bill to pass through this Committee so it can be considered in the Colorado House and hopefully turned into an actual law! 

If you follow me on Twitter you'll know that I went down to the Capitol last Tuesday. I was able to meet face-to-face with of the six of the thirteen Committee members to chat about the bill. Most of them are being inundated with meetings and messages from lobbyists who are opposed to SB71. There are lots of big pharmaceutical companies and pharmacies out there who think that it would be too much work to notify patients and their doctors if a biosimilar is substituted for the biologic the doctor prescribed. That's why it would be really helpful for the Representatives on the Committee to hear from more patients (or other concerned constituents!) who would like to see SB71 passed into law - without any amendments.

If you are a Colorado resident who cares about this issue, please consider emailing the Representatives on this Committee! If you need help getting started, I've included their names and email addresses below, as well as the email I sent to the Representatives I didn't have a chance to meet in person. You could write something similar! As patients (and people who care about patients!) we need to stand up for ourselves so the legislation that gets passed reflects what is best for patients.
Dear Representative NAME,

My name is Mariah Leach and I am a patient advocate with the Global Healthy Living Foundation's 50 State Network. I was diagnosed with rheumatoid arthritis at the age of 25 and have been living with this disease for the last six years. As someone who depends on biologic medications to function, I wanted to offer you my perspective on SB71, the biosimilars bill which will be considered at the hearing on Thursday afternoon.

Without biologic medications, I never would have gotten my condition well enough under control to graduate from law school and start my family. But as wonderful as biologic medications are, they can also be quite expensive. For that reason I am very excited about the promise that biosimilars hold - both for generating more options and providing less expensive treatment options.

However, I think this promise will be jeopardized if we do not pass legislation to create an accurate and transparent medical record for patients and their doctors. If a pharmacists substitutes a biosimilar for the biologic my doctor prescribed, I want to know about it and I want my doctor to know about it also. That is why the notification requirement if SB71 is so important.

I ask that you consider passing SB71 with no amendments. I will be offering my testimony at the hearing on Thursday, but if you have any other questions I can help with before then please do not hesitate to let me know.

Thank you again for your time. Have a great afternoon!

~Mariah Leach~

Thursday, February 26, 2015

24-Hours In The Life of An RA Mom

Being a mom is hard work…being a mom with a chronic illness can be even more of a challenge. I chronicle an ordinary day in the life of an RA mom.


(Note: this post was based on the #ChronicMom Tweet Chat and has been edited for RheumatoidArthritis.net. If you're interested in the full post, it can be found here.)

Tuesday, February 17, 2015

Biosimilars & Patient Notification

Biosimilars give patients like me hope. If I run out of options for traditional biologics, I may be able to turn to biosimilars once they are approved.

Wednesday, February 11, 2015

YourCareMoments: Get Paid To Provide The Patient Perspective!

This post is sponsored by YourCareMoments.

I’ve never done a sponsored post on this blog before. It’s not because I haven’t been interested. While I don’t want my blog to be overrun with advertisements, I do love the idea of being able to use my lemons to make lemonade (babies are expensive, yo!) And it’s not because I haven’t been given the opportunity. As my blog has grown in popularity, I’ve received a lot of emails asking me to promote products or publish guest posts. But I’m not particularly interested in endorsing products I haven’t tried or people I don’t know.

That’s one of the reasons I was so impressed when Keith Olsen from YourCareMoments reached out to me. YourCareMoments is conducting research about the affordability and accessibility of medications for RA patients. They collect the patient’s perspective through short online surveys, which participants are paid to take. This data is then provided to pharmaceutical and health insurance companies so the patient’s perspective can be taken into account. 

Instead of asking me to blindly support their research, Keith spoke with me on the phone and invited me to try YourCareMoments myself. I took a few surveys – they were quick and easy to follow – and I was promptly paid for my time. Keith has also been extremely responsive in listening to any feedback I have had to offer afterwards. 

So I’ve decided to share this opportunity with my readers! You can help provide the patient’s perspective AND get paid to do it!

How does it work?

Once you register with YourCareMoments, you will receive emails with links to participate in paid surveys after you see your doctor or pick up a prescription, when the information is still fresh in your mind. The surveys can be completed on a computer or mobile device. YourCareMoments will never ask for your name or address – the surveys are all anonymous. And if you have any questions or concerns along the way you can email or call Keith directly!

How long are the surveys?

Surveys take about 5 to 10 minutes to complete.

What do the surveys ask about?

Here are some sample questions: What medications are you currently taking to treat your rheumatoid arthritis? Did the doctor prescribe you any new medication or change your dosage during your visit? Please describe your level of satisfaction with the amount of information provided about your new prescription.

How much money to participants make?

The payment depends on the type and length of the survey. You will be informed before each survey how much you will earn.

How are participants paid?

Because YourCareMoments never asks for your name or address, participants are paid via paypal within 2-3 business days. 

What happens to the information participants provide?

The data will be analyzed by YourCareMoments and then sold to pharmaceutical and health insurance companies to help them gain insight into patient health care experiences, opinions, and habits. YourCareMoments works with pharmaceutical companies, but they do not work directly for any specific company or drug. 

Who can sign up?

Participants must be 18 years or older and living in the United States. In particular they are looking for patients who have been diagnosed with rheumatoid arthritis and prescribed Actemra, Cimzia, Enbrel, Humira, Orencia, Remicade, Simponi, or Xeljanz. If you are interested, you can register here: www.yourcaremoments.com

Tuesday, February 10, 2015

There Must Be A Better Way

I understand that the DEA is trying to discourage abuse and encourage monitoring of people taking these medications, but I can’t help thinking that there must be a better way.

My Interview on CBS Denver

Recently I had the opportunity to testify in front of the Colorado Senate Health & Human Services Committee on the issue of biosimilars. While I think biosimilars represent great opportunity for increased access to treatment (more options for medications, potentially less cost) I also believe that it is important that patients - and their doctors - be notified if the pharmacy gives them a biosimilar instead of the biologic their doctor prescribed. That's what my testimony was about.

Yesterday a camera crew from CBS Denver came to my house to interview me about the issue - and CZL and I were on the local news last night! Unfortunately it's a really short segment on a really complicated issue, so they didn't actually end up using very much of my commentary. But I think some press about the issue is still a good thing.

Here's the clip if you'd like to watch it!

48-Hours In The Life of a #ChronicMom

For those of you who are not on Twitter, I've decided to include my #ChronicMom tweets here so you can take a peek into 48 hours in the life of a mom with a chronic illness!!

February 3, 2015:

6:43PM: Whatever happens tomorrow please don't let my honesty discourage you. Being a #ChronicMom IS hard but also awesome!

February 4, 2015:

6:25AM: Baby crying & I hurt too much to even move. Hubby changes him & brings him to snuggle. Mornings can be hard. Baby smiles help.

6:37AM: Hubby walks our dog before work so the poor love can get some exercise. It's too much for me most days. And today it's snowing.

7:03AM: 2yo's up. His cough is worse. Sweetly asks me to carry him downstairs. I somehow manage his 30lb. Then go back up for 20lb 6mo.

7:10AM: Feeding sick 2yo = more challenge than usual. I put protein powder in his sippy so I don't end up with a hangry toddler.

7:19AM: 2yo barfed all over couch. I'm cleaning him, cleaning couch. Haven't eaten anything so no pain meds yet. Going to be a long day.

7:40AM: Baby crying. I gobble a granola bar while heating his bottle so I can take a pain pill. Prescription almost gone = problem.

7:47AM: 2yo who just barfed milk now crying since I won't give him more milk. Heaven help me it's not even 9am.

8:00AM: Trying to put baby down for a nap. 2yo comes up to scream for milk. Now they're both screaming. I'm the one who needs a nap!!

8:12AM: Baby asleep. 2yo watching Daniel Tiger. I finally get to eat some breakfast and email my rheumy for pain med refill.

8:28AM: "When something seems bad, turn it around, and find something good!" Thanks for the reminder Daniel Tiger!!

8:39AM: Crockpot = THE BEST. Prep meals when up for it, grab from freezer when not. It's a rough morning but dinner will be ready! 

8:48AM: Changing a poopy diaper with sore hands/wrists/fingers can be really challenging - especially with a wiggler!

8:58AM: iPad for 2yo + crinkle book for 6mo = shower for mama! Hot water helps my pain & being lean makes me feel more human

9:04AM: Between managing my health & raising 2 babies I literally can't remember the last time I had a haircut. Into a ponytail again!

9:25AM: Granny is here!! Reinforcements! I am so so lucky that my mom lives nearby!

9:43AM: Baby is rolling all around the floor & trying to crawl. Soon I'll have 2 on the go and then I'll really be in trouble!

10:09AM: I decide the barfing resulted from cough meds on empty stomach. I give in to incessant whining and give 2yo milk. Pray for me!

10:21AM: Pancakes = great for hiding nutrients: kale/chard, protein powder, coconut oil. I make a big batch to heat up all week.

10:25AM: Put lid on bottle to mix formula. Can't get it off again. Baby screaming. Yay for jar openers!

10:37AM: Good news: dr approved refill. Bad news: new law requires me to pickup & hand deliver paper script. I have 2 kids. It's snowing.

10:58AM: Sometimes I think 75% of motherhood is laundry. Hurts my hands to move the wet and fold the dry, but it's gotta get done!

11:05AM: 2yo has a fever. I take immunosuppressants. How to care for him without exposing my compromised immune system? It's no easy task.

11:08AM: Four loads of laundry to fold and my hands are killing me. Time to try some prescription anti inflammatory meds.

11:29AM: Both kids are miraculously napping at the same time!! I'm getting off my feet for a bit!

12:24AM: Baby's up. He chews a teether and coos while I eat my lunch of vegetable soup. It makes me happy. ~;o)

1:21PM: Hate needing pain meds just to function. After pharmacy battle I hope the Orencia actually arrives today - and I hope it works.

2:44PM: 2yo up from nap. 100 buckles later everyone is loaded in the car to run errands. Exhausted & we haven't left the house yet.

3:25PM: Drive 10+ miles to drs office. Load up double stroller. Haul kids thru snow to pick up a piece of paper.

3:55PM: I love bulk cooking! Made 6 meatloafs Sun & just took one to a mom w/ a 9 day old baby. All mamas deserve support!!

4:40PM: Drove to pharmacy. People are getting off work and parking is crowded. I use my handicap placard. It always makes me feel guilty.

4:42PM: Load up double stroller. Haul kids thru snow to hand-deliver paper. 30 mins. I'll have to come back tomorrow. This system sucks.

4:57PM: Finally home. Dinner smells awesome. Don't think I could survive without my crockpot. 

5:01PM: The Orencia arrived! Took Enbrel yesterday so I can't start until next week but at least I have it now!!

5:03PM: 2yo: What's in the box mommy?
Me: Mommy's medicine
2yo: You have a lot of medicine
Me: Yeah, buddy, I sure do

6:18PM: Dinner done. Kitchen clean. Hubby makes me an Epsom salt bath and I get a gloriious 30 min to myself! 

6:58PM: After my solo soak my sons get in the tub with me. Bubbles and giggles, splashes and smiles. often my favorite part of the day! 

7:14PM: Every day when I give my baby his last bottle I miss breastfeeding him. But without RA meds I wouldn't even be able to hold him. 

7:31PM: Hubby rubbing icy hot on my leg to try to relieve the intense pain in my left ankle. He's the best.

February 5, 2015:

6:22AM: One benefit of not breastfeeding: hubby can do 3am feedings so I can take meds to help me sleep through the pain.

6:30AM: 6mo weighs 21lb. He's so smiley in the mornings - but lifting him hurts so much I want to cry. I hope the new meds help soon

6:56AM: Woke with a headache. Usually means (TMI) I'm getting my period. Because what I really need is a few more reasons to feel yucky!

7:19AM: First baby didn't crawl till he was 11mo. Second baby looks determined to do it today!! I think I'm in trouble!

7:37AM: Had to cancel regular playdate due to 2yo's cough/fever. Now face w/ figuring out how to entertain them all morning on my own.

7:46AM: Things I want my sons to learn from having a mom with RA: http://rheumatoidarthritis.net/living/things-i-want-my-sons-to-learn/

9:56AM: Baby napping. Sick 2yo watching excessive amounts of Daniel Tiger. Mommy working but hands hurt so typing/mousing is hard

12:09PM: 2yo napping. Baby up. It's like whack-a-mole around here. Everyone gets a nap but me!!

12:31PM: Granny comes to watch the boys so I can swim. I don't feel like going (pain/headache) but I know how lucky I am so I go anyways

1:18PM: I swim 30 laps & tread water for 5min. Nothing like my water polo days (when I LIVED in the pool) but it's something!

1:29PM: Feeling spoiled to pick up my pain meds w/out my double stroller entourage. Only took 3 trips & 2 days to get my refill haha

2:11PM: Problem w/ exercise: now I'm exhausted & on my own w/ two kids until hubby gets home. Deep breaths (& likely more Daniel Tiger)

2:23PM: No matter what kind of mom you are, you will at some point find yourself literally up to your elbows in poop.

2:51PM: Babywearing: a useful took for calming a fussy baby with less strain on your hands/wrists

2:53PM: At least he stopped crying! 

3:38PM: Nutrition trick: green cubes! Steam, puree, and freeze chard/kale/greens. 30min work = easy nutrition!

3:39PM: I add green cubes to EVERYTHING! Sauces, soups, ground meat, pancakes, muffins...nutrients for my whole family!

4:37PM: 2yo makes Lego tower. 6mo spits up on it. Mommy pries it apart to clean nooks & crannies w/ sore fingers ::sigh::

5:25PM: Made delicious taco salad for dinner. Sadly it doesn't go too well with jaw pain.

6:40PM: Getting the kiddos to bed so I can take part in a conference call with Seth's 50 State Network http://www.ghlf.org/seths-50-state-network/

8:05PM: Share your story!! You might be able to influence healthcare legislation! (COSenate passed SB71 today!)

8:09PM: If you are a #ChronicMom (or want to become one) reach out to us!! It's a hard job but you don't have to do it alone! Thanks for following!

Friday, February 6, 2015

My SB71 Testimony

Last week, I had the opportunity to make a difference in the lives of patients in Colorado by sharing my story in front of the Senate Health & Human Services Committee. The Committee was hearing testimony concerning SB71, a bill that will help the state of Colorado figure out how to regulate biosimilars when they eventually come to market. 

Many of us living with RA (and other chronic illnesses) currently rely on biologic medications to function in our day-to-day lives. Biologic medications have very unique, complex molecular structures that are made from living cells. These structures are not easily replicated, which means that it's not possible to create "generic" versions of biologic medications (which is one of the reasons biologics are so expensive!) 

Right now scientists and pharmaceutical companies are working to develop biosimilar versions of many biologic medications. Eventually, the Food and Drug Administration (FDA) may decide that some of these biosimilars will be considered interchangeable with the biologic medications they mimic. In fact, earlier this month an FDA advisory committee voted to recommend that the government approve its first biosimilar application. So it is only a matter of time until biosimilars come to the market. But while biosimilars have the potential to provide lower-cost access to treatment, even the slightest difference - whether in the manufacturing or even the handling process - could have a significant health impact on patients.

SB71 attempts to update Colorado law to cover biologics and biosimilars in a way that protects patients. Importantly, it requires pharmacies to notify patients and their doctors if a biosimilar is substituted for the biologic the doctor prescribed. This notification requirement is particularly important to help patients have the information they need to make the best possible decisions about their healthcare. (If you'd like to read the full text of the proposed bill you can find it here.)

Here's the testimony I gave last week in support of SB71:
Good afternoon Mr. Chairman and members of the Committee. My name is Mariah Leach. I am a patient advocate and member of the Global Healthy Living Foundation's 50 State Network. I want to thank you for allowing me to speak today. I live in Louisville and I was diagnosed with rheumatoid arthritis at the age of 25, right in the middle of law school at CU. Today I am here to support the passage of Senate Bill 71.

I have taken biologic medications for six years to treat my rheumatoid arthritis. Without these medications I never would have gotten my condition well enough under control to graduate from law school. Since then I have been off biologics only twice - after I became pregnant with each of my sons. My older son is 2.5 and my younger son was born six months ago today.

During my most recent pregnancy, my RA flared so badly that I couldn't get out of bed, let alone take care of my first child. My rheumatologist, OB, and pediatrician decided together that the best course of action was for me to re-start my biologic medication during my third trimester. The data showing that this would be relatively safe for my unborn son was extremely limited, which made it a very difficult decision. But with the help of my biologic medication I was able to manage the remainder of my pregnancy. Luckily I had no additional complications and my second son was born healthy.

After making such a difficult decision, what if the pharmacy had substituted a biosimilar for the biologic my doctor had prescribed without my knowledge? And without my doctor's knowledge? Such a substitution could have put me and my unborn son at risk. Senate Bill 71 updates Colorado law to protect patients like me, making sure that patients - and their doctors - have the information necessary to make these complicated decisions.

I may not be able to control my toddler, but I do want to be control of my own health as well as the treatments I receive. Recently the biologic medication I am on stopped working for me. This means that I will have to switch to a different biologic - my third since my diagnosis - in the hopes that it will be more effective.

But what if I experience an adverse reaction from my new medication? How am I supposed to adequately manage my disease - and consequently live my life - if I don't even know what drugs I am actually receiving? It's vital that an accurate and transparent medical record is established. This will allow my doctor and I to determine which medication is responsible for any adverse reactions so that we can take the necessary steps quickly. I want and need this information and so does my doctor. 

As a patient living with rheumatoid arthritis, I know that biosimilars have amazing potential. The development of these medications gives me hope, because if I run out of options for traditional biologic medications I can potentially turn to a biosimilar. I have also struggled to afford my biologic medication, so when you couple more options for treatment with the projected affordability it's easy to see the promise biosimilars hold. But this promise will be jeopardized if we do not pass legislation that puts patient safety and transparency first.

The Global Healthy Living Foundation and I urge the members of this Committee to support Senate Bill 71. I truly appreciate your consideration of my remarks and I would be happy to answer any questions you may have. Thank you so much for your time and attention.
After my testimony - and the testimony of many others including pharmaceutical companies, pharmacy groups, and other patients - the Committee voted to pass the bill. At first they adopted an amendment to take out the important notification language in the bill, but this decision was later reversed. Now the bill has been passed through the Colorado Senate with the notification language intact. If it can get through the House Committee we are on our way to having a real law in Colorado that will help protect patients, and it's very exciting to have been a part of that!!

Thursday, February 5, 2015